Education About Disabilities/Diagnoses

Suggest a New Provider

Programs that offer workshops, discussion groups, activities and other types of training that sensitize participants to people with disabilities, visible differences, and mental health and mental illness. Includes information for individuals and families with these conditions, as well as information to help others experience what it is like to have a disability, and share techniques for positive communication and interaction with people who have disabilities. (Adapted from AIRS PH-6200.1850 Disability Awareness Programs )

If you know of a Service that should be listed but isn't, please Suggest a New Provider. If you find errors in a listing, please let us know by using the "Suggest an Edit" form on the provider's detail page.

RI (7)

Statewide(1)

East Providence(1)

Providence(5)

Nationwide (32)

RI

Statewide

The Autism Project, The Autism Project

1516 Atwood Avenue
Johnston, RI 02919
Phone: 401-785-2666

Service Categories:

www.theautismproject.org/

Organization Name: The Autism Project
(Show others in Organization)

Address: 1516 Atwood Avenue
Johnston, RI 02919

Phone: 401-785-2666

Fax: 401-785-2272

Service Categories:

URL: http://www.theautismproject.org/

Eligibility: All are welcome.

Wheelchair Accessible: Yes

Services Provided: Professional Training
Program, classroom and individual consultation
Parent Education Series and Support
Grandparent Support Groups
Social Skill Groups
Summer Camp
Advocacy

Provider Profiles: The Autism Project is a ‘Hub of Hope’ that connects people—with a spectrum of needs—to the available resources and education that support independent and purposeful lives.
Autism Project
1516 Atwood AVenue
Johnston, RI 02919

Source:	Rhode Island Dept of Health, Office of Special Needs
Last Updated:	12/30/2019

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East Providence, RI

Verrecchia Clinic for Children with Autism and Developmental Disabilities, Bradley Hospital

Outpatient Services
1011 Veterans Memorial Parkway
East Providence, RI 02915
Phone: 401-432-1119

Service Categories:

www.lifespan.org/centers-services/center-autism-and-developmental-disabilities-cadd

Organization Name: Bradley Hospital
(Show others in Organization)

Address: Outpatient Services
1011 Veterans Memorial Parkway
East Providence, RI 02915

Phone: 401-432-1119

Service Categories:

URL: https://www.lifespan.org/centers-services/center-autism-and-developmental-disabilities-cadd

Eligibility: ages 5-21

Services Provided: Outpatient care for specialized behavioral health needs of individuals ages 5-21 with developmental challenges , including Autism Spectrum Disorders, anxiety,mood dysregulation,ADHD,adjustment problems,aggression and oppositional behavior as well as challenges to parents and families. The clinic offers Individual Therapy, Family Therapy, Parent Training in behavior management, group therapy, Medication management, psychiatric consultation, and genetic psychiatry consultation

Provider Profiles: Clinical staff includes:
psychologists
social worker
psychiatrists

Source:	Rhode Island Dept of Health, Office of Special Needs
Last Updated:	3/19/2019

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Providence, RI

Dare to Dream Student Leadership Initiative , RI Department of Health

3 Capitol Hill
Providence, RI 02908
Phone: 401-222-5954

Service Categories:

www.health.ri.gov/specialneeds/about/daretodream/

Organization Name: RI Department of Health
(Show others in Organization)

Address: 3 Capitol Hill
Providence, RI 02908

Phone: 401-222-5954

Toll Free Phone: 401-222-5954

Service Categories:

URL: http://www.health.ri.gov/specialneeds/about/daretodream/

Eligibility: Middle School and High School and young adults

Services Provided: Trainings
State wide youth led conference with national speakers

Provider Profiles: Dare to Dream Initiative provides opportunities for youth with special needs to develop skills, relationships and leadership ability. The Dare to Dream Initiative provides a framework for local community groups and schools to receive technical assistance to start Dare to Dream clubs and to develop Dare to Dream workshops. The workshops highlight strategies that help prepare students for college, career and independent living.

Source:	Rhode Island Dept of Health, Office of Special Needs
Last Updated:	7/1/2016

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Medical Psychiatric Pediatric Program, Hasbro Children's Hospital

Potter Building
593 Eddy Street
Providence, RI 02903
Phone: 401-444-8638

Service Categories:

www.lifespan.org/centers-services/medical-psychiatric-program-hasbro-childrens-hospital

Organization Name: Hasbro Children's Hospital
(Show others in Organization)

Address: Potter Building
593 Eddy Street
Providence, RI 02903

Phone: 401-444-8638

Service Categories:

URL: https://www.lifespan.org/centers-services/medical-psychiatric-program-hasbro-childrens-hospital

Eligibility: ages 6-18 , referred by physician or sub-specialist

Services Provided: Pediatric and nursing monitoring
Individual and family therapy
Nutritional services
Group therapy
Instruction in a skills-building curriculum focused on mindfulness, cognitive and behavioral coping strategies, and healthy emotional expression
90 minutes daily of educational programming, coordinated with home schools
Involvement with physical therapy, occupational therapy, speech therapy, and biofeedback as indicated

Provider Profiles: Our partial hospital program addresses the needs of 6-to 18-year-olds with the same range of diagnoses treated on the inpatient unit. Diagnoses may include gastrointestinal illnesses, eating disorders, diabetes, asthma, seizures, pain syndromes, somatoform disorders, and complex presentations needing diagnostic evaluations.

These children may not require an inpatient stay, but do require a high level of support due to impaired functioning in the home and school settings and/or limited response to outpatient intervention. Some patients may step down to the partial program after a stay as an inpatient, while others at high risk for hospitalization may be able to avoid an inpatient stay by participating.

The program is located in newly renovated and expanded space in the Potter Building, on the Hasbro Children’s/Rhode Island Hospital campus. Children spend an average of three to four weeks in the program, arriving Monday through Friday at 7:30 a.m. and leaving at 3:30 p.m. Breakfast, lunch and snacks are served. Children receive daily pediatric and psychiatric assessment and treatment.

Source:	Rhode Island Dept of Health, Office of Special Needs
Last Updated:	1/12/2018

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Paul V. Sherlock Center on Disabilities

Rhode Island College
600 Mount Pleasant Avenue
Providence, RI 02908
Phone: 401-456-8072

Service Categories:

www.ric.edu/sherlockcenter/

Address: Rhode Island College
600 Mount Pleasant Avenue
Providence, RI 02908

Phone: 401-456-8072

TDD: 800-745-5555

Fax: 401-456-8150

Service Categories:

URL: http://www.ric.edu/sherlockcenter/

Languages Spoken: Spanish via RI Relay 711 or (866) 355-9241

Eligibility: Statewide

Services Provided: Services Provided:
• Technical assistance and training in the areas of Early Intervention, infant mental health and trauma-based care practices, inclusive practices in schools, Positive Behavioral Interventions and Supports and Multi-Tiered Systems of Supports in schools, learners with low incidence disabilities (vision, hearing, deaf-blindness), transition from high school, and community-based employment strategies for youth and adults.
• Services include:
o Instruction and mobility services to children who are blind or visually impaired.
o Educational Advocates for students with disabilities who are in state care.
o Benefits counseling and assistance for Social Security beneficiaries.
o Family support and navigation of services.
o Support group for self-directed support users (DDD)
o Plan writing for self-directed support users (DDD).
o Support for parents with intellectual disabilities.
o Support to students in post-secondary education.

Provider Profiles: Paul V. Sherlock Center on Disabilities, founded at Rhode Island College in 1993, is a University Center for Excellence in Developmental Disabilities (UCEDD). UCEDDs are evidence driven and designed to advance policies, practices, and research that improve the health, education, social, and economic well-being of people with disabilities, their families, and their communities. There are 67 UCEDD programs in the United States. This national network is administered through the United States Department of Health and Human Services Administration on Developmental Disabilities.
The Sherlock Center partners with state and national agencies, schools, institutions of higher education and community providers to implement its core functions: preservice preparation, services (including technical assistance, community education, and direct services), research, and information dissemination. As of 2016, the Sherlock Center is a LEND (Leadership Education in Neurodevelopmental and Related Disabilities) Program.
Areas of Emphasis:
Early Childhood and Education
Inclusion and Community Membership
Low Incidence Disabilities
Self-Determination
Transition, Employment and Adult Life
Workforce and Professional Development

Source:	Rhode Island Dept of Health, Office of Special Needs
Last Updated:	10/21/2019

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Pediatric Pulmonology, Hasbro Children's Hospital

Hasbro Hospital Lower Level
593 Eddy Street
Providence, RI 02903
Phone: 401-444-6540

Service Categories:

www.hasbrochildrenshospital.org/pulmonology.html

Organization Name: Hasbro Children's Hospital
(Show others in Organization)

Address: Hasbro Hospital Lower Level
593 Eddy Street
Providence, RI 02903

Phone: 401-444-6540

Fax: 401-444-6543

Service Categories:

URL: http://www.hasbrochildrenshospital.org/pulmonology.html

Services Provided: The Pediatric Pulmonary Medicine Division at Hasbro Children's Hospital.
Services:
Cystic Fibrosis Center
Flexible Bronchoscopy Service
General Pediatric Pulmonary
Pulmonology Function Test Lab
Ventilator Integration Program (VIP)
We consult and provide health care for children with a range of acute and chronic respiratory conditions, including:

Asthma
Bronchopulmonary dysplasia
Chronic cough
Congential lung and airway abnormalities
Cystic fibrosis
Interstitial lung disease
Obstructive sleep apnea
Primary ciliary dyskinesia
Respiratory disease associated with gastroesophageal reflux
Respiratory disease associated with neurological and neuromuscular disorders
Sickle cell lung disease
Tracheostomy
Ventilator dependence
Vocal cord dysfunction

Provider Profiles: We consult and provide health care for children with a range of acute and chronic respiratory conditions.
The Cystic Fibrosis Center is certified by the Cystic Fibrosis Foundation.
Additional Office Locations
East Greenwich Specialty Clinic
1454 South County Trail
East Greenwich, RI 02818
and
East Providence Offices
900 Warren Avenue
East Providence, RI 02914

Source:	Rhode Island Dept of Health, Office of Special Needs
Last Updated:	12/14/2018

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The Adolescent Leadership Council ( TALC), Hasbro Children's Hospital

P.O. Box 122
593 Eddy Street
Providence, RI 02903
Phone: 401-444-7563

Service Categories:

www.lifespan.org/centers-services/adolescent-leadership-council-talc

Organization Name: Hasbro Children's Hospital
(Show others in Organization)

Address: P.O. Box 122
593 Eddy Street
Providence, RI 02903

Phone: 401-444-7563

Fax: 401-444-7018

Service Categories:

URL: https://www.lifespan.org/centers-services/adolescent-leadership-council-talc

Eligibility: If you are 13-18 years old and live with a chronic medical illness, you may be eligible to join TALC! We accept new TALC members year round.

Services Provided: The Adolescent Leadership Council ( TALC) ages 13-18 The Adolescent Leadership Council (TALC) strives to prepare teenagers for the transition to adulthood and independence by providing them with mentors they can relate to. Meets monthly during school year plus a yearly overnight summer leadership camp and other events.
TALC Jr. TALC Jr. is a program for 8 to 12 year olds and their parents that meets every other month throughout the school year. TALC Jr. has the same goals as TALC but is for younger kids. Some of the teens in TALC act as mentors for TALC Jr

TALC Parent Council - focuses on a topic related to their child’s chronic illness. The group is facilitated by medical residents. At least one college age mentor (who lives with a chronic illness) joins the parent group every month to give the perspective of a young adult who has an illness and has recently transitioned from high school to college.

Provider Profiles: Transitioning from childhood to being a teenager, to the independence of young adulthood is challenging. Consider what it would be like to cope with typical teen angst and have to manage a chronic illness as well.
For teens with a variety of chronic medical conditions such as asthma, diabetes, lupus, cancer, sickle cell anemia, Crohn’s disease, and epilepsy, they don’t have to do it alone. The Adolescent Leadership Council (TALC) provides a forum for adolescents ages 13-18 who are managing a chronic illness to interact with peers who are going through similar experiences and to meet college-age mentors who also have a chronic illness. Through programming, TALC members gain insights and perspective along with the confidence and advocacy skills needed to navigate their medical circumstance in the short- and long-term.
TALC teens meet monthly during the academic year, participate in social and art-related events, attend an annual team-building retreat and an annual overnight summer leadership camp. TALC also serves as the official “Youth Advisory Council” for the hospital.

Source:	Rhode Island Dept of Health, Office of Special Needs
Last Updated:	10/15/2018

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Nationwide

ADDitude Magazine

108 West 39th Street, Suite 805
New York, NY 10018
Phone: 6463660830

Service Categories:

www.additudemag.com/

Address: 108 West 39th Street, Suite 805
New York, NY 10018

Phone: 6463660830

Service Categories:

Email: customerservices@additudemag.com

URL: https://www.additudemag.com/

Services Provided: Online resources and information related to Attention Deficit Hyperactive Disorder (ADD and ADHD) for children, adults, parents, schools, and more.

Source:	Nationwide Suggest Providers Queue
Last Updated:	4/14/2020

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American Academy for Cerebral Palsy and Developmental Medicine

555 E. Wells Street, Ste 1100
Milwaukee, WI 53202
Phone: 414-918-3014

Service Categories:

www.aacpdm.org/index.php

Address: 555 E. Wells Street, Ste 1100
Milwaukee, WI 53202

Phone: 414-918-3014

Fax: 414-276-2146

Service Categories:

URL: http://www.aacpdm.org/index.php

Services Provided: A multidisciplinary scientific society devoted to the study of cerebral palsy and other childhood onset disabilities, to promoting professional education for the treatment and management of these conditions, and to improving the quality of life for people with these disabilities.

Source:	Medical Home Portal
Last Updated:	3/22/2018

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American Academy of Pediatrics (AAP)

141 Northwest Point Blvd
Elk Grove Village, IL 60007-1098
Phone: 847-434-4000

Service Categories:

www.aap.org/en-us/Pages/Default.aspx

Address: 141 Northwest Point Blvd
Elk Grove Village, IL 60007-1098

Phone: 847-434-4000

Fax: 847-434-8000

Service Categories:

URL: https://www.aap.org/en-us/Pages/Default.aspx

Services Provided: Professional association dedicated to the health, safety, and well-being of all infants, children, adolescents, and young adults.

Source:	MHP-Nationwide
Last Updated:	1/10/2020

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American Heart Association

7272 Greenville Avenue
Dallas, TX 75231
Phone: 214-373-6300

Service Categories:

www.heart.org/en/

Address: 7272 Greenville Avenue
Dallas, TX 75231

Phone: 214-373-6300

Toll Free Phone: 888-242-2453

Service Categories:

URL: https://www.heart.org/en/

Services Provided: Information for individuals, families, and professionals regarding heart-related concerns. Includes general health information, information regarding specific conditions, and information about CPR and First Aid training.

The [https://www.heart.org/en/ American Stroke Association] is a division of the American Heart Association focused on stroke prevention and treatment.

Source:	Nationwide Suggest Providers Queue
Last Updated:	2/7/2020

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Association for X and Y Variations (AXYS)

PO Box 659
Paoli, PA 19301
Phone: 888-999-9428

Service Categories:

genetic.org/

Address: PO Box 659
Paoli, PA 19301

Phone: 888-999-9428

Service Categories:

Email: info@genetic.org

URL: https://genetic.org/

Services Provided: Information about chromosome variation for for parents and parents-to-be, individuals, and medical professionals.

Services include:
-Helpline: 888-999-9428 or helpline@genetic.org
-Support meetings, conferences, and webinars
-Information about chromosome variations
-[https://genetic.org/professional-directory-info/ Professional Directory]
-[https://genetic.org/im-adult-looking-answers/clinics/ AXYS Clinic and Research Consortium] clinic list
-[https://genetic.org/im-adult-looking-answers/support-groups/ Support Groups]

Source:	Nationwide Suggest Providers Queue
Last Updated:	2/7/2020

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4340 East-West Highway Suite 350
Bethesda, MD 20814
Phone: 301-657-0881

Service Categories:

www.autism-society.org/

Address: 4340 East-West Highway Suite 350
Bethesda, MD 20814

Phone: 301-657-0881

Toll Free Phone: 800-328-8476

Service Categories:

Email: info@autism-society.org

URL: https://www.autism-society.org/

Services Provided: We provide advocacy, education, information and referral, support, and community at national, state and local levels through our strong nationwide network of Affiliates.

Disability Awareness Programs
Specialized Information and Referral

Source:	Nationwide Suggest Providers Queue
Last Updated:	8/7/2019

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Batement Horn Center (BHC)

24 South 1100 East, Suite 205
Salt Lake City, UT 84102
Phone: 801-359-7400

Service Categories:

batemanhornecenter.org/

Address: 24 South 1100 East, Suite 205
Salt Lake City, UT 84102

Phone: 801-359-7400

Fax: 801-359-7404

Service Categories:

Email: support@batemanhornecenter.org

URL: https://batemanhornecenter.org/

Eligibility: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia (FM), and other related illnesses. Must have a primary care provider and complete an application.

Wheelchair Accessible: Complete

Services Provided: Leading the way in the medical advancement and treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia. Formerly the Fatigue Consultation Clinic (FCC) and the Organization for Fatigue & Fibromyalgia Education & Research (OFFER), BHC been committed to the education of medical providers for more than 25 years.

Engages in research and provides treatment. Educational Resources available for providers and patients.

Contact Information:
Clinic Phone: (801) 359-7400
Research Phone: (801) 532-8311
Research Fax: (801) 364-3528
Clinic Fax: (801) 359-7404

Source:	Nationwide Suggest Providers Queue
Last Updated:	4/17/2020

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Beach Center on Disability, University of Kansas

Haworth Hall, Room 313
1200 Sunnyside Avenue
Lawrence, KS 66045-7534
Phone: 785-864-7600

Service Categories:

beachcenter.lsi.ku.edu/

Organization Name: University of Kansas
(Show others in Organization)

Address: Haworth Hall, Room 313
1200 Sunnyside Avenue
Lawrence, KS 66045-7534

Phone: 785-864-7600

Fax: 785-864-7605

Service Categories:

URL: https://beachcenter.lsi.ku.edu/

Services Provided: The Beach Center on Disability is a multidisciplinary research and training center committed to making a significant and sustainable positive difference in the quality of life of individuals and families affected by disability and the professionals who support them. Internationally-recognized leaders in research on and interventions to promote the self-determination of children, youth, and adults with (and without) disabilities.

Provider Profiles: Based at the University of Kansas.

Source:	MHP-Nationwide
Last Updated:	1/6/2020

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CDC Information Line, Centers for Disease Control and Prevention

1600 Clifton Road
Atlanta, GA 30333
Phone: 800-232-4636

Service Categories:

www.cdc.gov/cdc-info/index.html

Organization Name: Centers for Disease Control and Prevention
(Show others in Organization)

Address: 1600 Clifton Road
Atlanta, GA 30333

Phone: 800-232-4636

TDD: 888-232-6348

Toll Free Phone: 800-232-4636

Service Categories:

URL: https://www.cdc.gov/cdc-info/index.html

Eligibility: Open to the public.

Services Provided: Information provided on more than 750 health topics, including travel immunizations, disease outbreaks, natural disasters, and other emergencies

Source:	MHP-Nationwide
Last Updated:	1/24/2020

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Cystic Fibrosis Foundation

4550 Montgomery Avenue, Suite 1100 N
Bethesda, MD 20814
Phone: 301-951-4422

Service Categories:

www.cff.org/

Address: 4550 Montgomery Avenue, Suite 1100 N
Bethesda, MD 20814

Phone: 301-951-4422

Toll Free Phone: 800-344-4823

Fax: 301-951-6378

Service Categories:

URL: https://www.cff.org/

Services Provided: The mission of the Cystic Fibrosis (CF) Foundation is to cure cystic fibrosis and provie all people with CF the opportunity to lead long, fulfilling lives.

The CF Foundation funds research and drug development and provides CF-related resources for families and medical providers.

[https://www.cff.org/Assistance-Services/About-Compass/What-Is-Compass/ Compass] is a personalized one-on-one service to help with the insurance, financial, legal, and other issues faced by people living with CF, their families, and their care teams.

The [https://www.cff.org/ccd/ CF Care Center] finder is a web-based location finder for cystic fibrosis accredited care centers nationwide. The Cystic Fibrosis Foundation provides funding for and accredits more than 110 cystic fibrosis care centers and 55 affiliate programs nationwide, including 96 programs for treating adults with CF.

Source:	MHP-Nationwide
Last Updated:	2/7/2020

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Depression and Bipolar Support Alliance

55 East Jackson Blvd., Suite 490
Chicago, IL 60604
Phone: 800-826-3632

Service Categories:

www.dbsalliance.org/

Address: 55 East Jackson Blvd., Suite 490
Chicago, IL 60604

Phone: 800-826-3632

Toll Free Phone: 800-826-3632

Fax: 312-642-7243

Service Categories:

URL: https://www.dbsalliance.org/

Eligibility: Contact for specific information.

Services Provided: Educates patients, professionals, and the public concerning the nature of depressive, bipolar disorder (also known as manic depression) or mood disorder. Maintains over 1000 support groups around the country.

Provider Profiles: National

Source:	MHP-Nationwide
Last Updated:	1/17/2020

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Epilepsy Foundation of America

8301 Professional Place East, Ste 230
Landover, MD 20785-2356
Phone: 301-459-3700 Crisis Line: 800-332-1000

Service Categories:

www.epilepsy.com/

Address: 8301 Professional Place East, Ste 230
Landover, MD 20785-2356

Phone: 301-459-3700

Crisis Line: 800-332-1000

Toll Free Phone: 800-332-1000

Fax: 301-577-2684

Service Categories:

Email: ContactUs@efa.org

URL: https://www.epilepsy.com/

Eligibility: Individuals with epilepsy, their families and friends.

Wheelchair Accessible: Full Wheelchair Access

Services Provided: Provides information, advocacy, and assistance finding doctors, legal assistance, support groups and transportation reimbursement. Learn about epilepsy, types of seizures, triggers, diagnosis, treatment, etc. Offers a seizure diary app self-management tool.

Spanish-language line: 866-748-8008

Provider Profiles: Spanish Speakers Phone number: 866-748-8008

Source:	Nationwide Suggest Providers Queue
Last Updated:	1/24/2020

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Fabry Support & Information Group (FSIG)

108 NE 2nd St
PO Box 510
Concordia, MO 64020
Phone: 660-463-1355

Service Categories:

fabry.org/

Address: 108 NE 2nd St
PO Box 510
Concordia, MO 64020

Phone: 660-463-1355

Toll Free Phone: 866-303-2279

Service Categories:

Email: info@fabry.org

URL: https://fabry.org/

Services Provided: Information about Fabry disease, support group, discussion page, information about research, links to resources, and more.

Source:	MHP-Nationwide
Last Updated:	1/31/2020

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Frank Porter Graham Child Development Institute (FPG), University of North Carolina at Chapel Hill

CB 8180
Chapel Hill, NC 27599-8180
Phone: 919-966-2622

Service Categories:

fpg.unc.edu/about-fpg

Organization Name: University of North Carolina at Chapel Hill
(Show others in Organization)

Address: CB 8180
Chapel Hill, NC 27599-8180

Phone: 919-966-2622

Service Categories:

URL: https://fpg.unc.edu/about-fpg

Services Provided: Enhances the lives of children and families through interdisciplinary research, technical assistance, professional development, and implementation science. FPG is one of the nation's oldest and largest multidisciplinary centers devoted to the study of young children and their families. About 275 researchers, implementation and technical assistance specialists, staff, and students work on more than 75 projects related to developmental disabilities; early care and education; physical and social health; professional development, technical assistance, and implementation science; public policy and evaluation; and racial, ethnic, linguistic, cultural, and socioeconomic diversity.

Source:	Medical Home Portal
Last Updated:	1/10/2019

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Hear Now, Starkey Hearing Foundation

6801 Washington Ave S, Suite 200
Minneapolis, MN 55349
Phone: 800-328-8602

Service Categories:

www.starkeyhearingfoundation.org/Hear-Now

Organization Name: Starkey Hearing Foundation
(Show others in Organization)

Address: 6801 Washington Ave S, Suite 200
Minneapolis, MN 55349

Phone: 800-328-8602

Toll Free Phone: 800-328-8602

Fax: 952-947-4997

Service Categories:

Email: hearnow@starkeyfoundation.org

URL: https://www.starkeyhearingfoundation.org/Hear-Now

Eligibility: Deaf or hard of hearing; Low income adults or children at or below 175% poverty + asset test

Services Provided: A national nonprofit program committed to assisting those who are deaf or hard of hearing and have no other resources to acquire hearing aids.

Also accepts donation of used hearing aids.

Source:	Nationwide Suggest Providers Queue
Last Updated:	1/24/2020

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Immune Deficiency Foundation

110 West Road Ste 300
Towson, MD 21204
Phone: 800-296-4433

Service Categories:

www.primaryimmune.org/

Address: 110 West Road Ste 300
Towson, MD 21204

Phone: 800-296-4433

Fax: 410-321-9165

Service Categories:

Email: frontdesk@primaryimmune.org

URL: https://www.primaryimmune.org/

Eligibility: Individuals with primary immunodeficiency diseases and their families

Services Provided: A national patient organization dedicated to improving the diagnosis, treatment, and quality of life of persons with primary immunodeficiency diseases through advocacy, education, and research. Learn about primary immunodeficiencies, it's diagnosis, treatment; and living with PI, at different ages, getting support, finding a physician, insurance, school, etc.

IDF Physician Finder to locate a physician by location, last name, specialty and more.

Source:	MHP-Nationwide
Last Updated:	1/6/2020

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200 Vesey Street, 28th Floor
New York, NY 10281
Phone: 800-533-2873

Service Categories:

www.jdrf.org/

Address: 200 Vesey Street, 28th Floor
New York, NY 10281

Phone: 800-533-2873

Fax: 212-785-9595

Service Categories:

Email: info@jdrf.org

URL: https://www.jdrf.org/

Services Provided: JDRF's (formerly Juvenile Diabetes Research Foundation) primary objective is to fund research into Type 1 diabetes.
Also provides:
•Informational Guides
•Virtual community
•Local chapters
•Fundraising and social events

Source:	Nationwide Suggest Providers Queue
Last Updated:	1/3/2020

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John Tracy Clinic for Young Children with Hearing Loss

806 West Adams Boulevard
Los Angeles, CA 90007
Phone: 213-748-5481

Service Categories:

www.jtc.org/

Address: 806 West Adams Boulevard
Los Angeles, CA 90007

Phone: 213-748-5481

Fax: 213-749-1651

Service Categories:

URL: https://www.jtc.org/

Eligibility: Infants and preschool children with hearing loss.

Services Provided: A leading diagnostic and education center for young children with hearing loss. It provides free, parent-centered services. The Clinic offers worldwide family services, local family services, professional education, preschool, and hearing testing. The Clinic has over 60 years of expertise in the spoken language option, called "oralism," serving 25,000 families each year.

Hearing Screening
Parent Support Groups
Preschools
Online courses

Source:	Nationwide Suggest Providers Queue
Last Updated:	8/7/2019

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Lupus Foundation of America

2121 K Street NW, Suite 200
Washington, DC 20037
Phone: 202-349-1155

Service Categories:

www.lupus.org/about-us

Address: 2121 K Street NW, Suite 200
Washington, DC 20037

Phone: 202-349-1155

Toll Free Phone: 800-558-0121

Fax: 202-349-1156

Service Categories:

Email: info@lupus.org

URL: https://www.lupus.org/about-us

Services Provided: Provides education and support services to people affected by lupus. We collaborate with experts to provide clear, easy-to-use information, programs and resources to help you navigate every step of your journey with lupus. An online community, an expert series, a resource database, a nurse and certified health educator call line.

Source:	MHP-Nationwide
Last Updated:	8/6/2019

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Maple Syrup Urine Disease Family Support Group

9517 Big Bear Ave
Powell, OH 43065
Phone: 740-972-5619

Service Categories:

www.msud-support.org/

Address: 9517 Big Bear Ave
Powell, OH 43065

Phone: 740-972-5619

Service Categories:

URL: http://www.msud-support.org/

Eligibility: Any persons with interest in MSUD

Services Provided: The MSUD Family Support Group membership includes families and professionals worldwide.

The MSUD Family Support Group is dedicated to:
• Providing opportunities for support and personal contact for those with MSUD and their families.
• Distributing information and raising public awareness of MS
• Strengthening the liaison between families and professionals.
• Encouraging newborn screening programs and research for MSUD.

Source:	Nationwide Suggest Providers Queue
Last Updated:	1/24/2020

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Multiple Sclerosis Associations of America

375 Kings Highway North
Cherry Hill, NJ 08034

Service Categories:

mymsaa.org/

Address: 375 Kings Highway North
Cherry Hill, NJ 08034

Toll Free Phone: 800-532-7667

Fax: 856-661-9797

Service Categories:

Email: MSquestions@mymsaa.org

URL: https://mymsaa.org/

Eligibility: Individuals with MS

Services Provided: Ongoing support and direct services.

Individual Advocacy
Information and Referral
Equipment Distribution Program by application

Source:	Nationwide Suggest Providers Queue
Last Updated:	8/8/2019

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Multiple Sclerosis Foundation (MSFOCUS)

6520 North Andrews Avenue
Fort Lauderdale, FL 33309-2132

Service Categories:

msfocus.org/

Address: 6520 North Andrews Avenue
Fort Lauderdale, FL 33309-2132

Toll Free Phone: 800-225-6495

Service Categories:

URL: https://msfocus.org/

Wheelchair Accessible: Ramps

Services Provided: Nonprofit organization, our primary mission is to ensure the best quality of life for those coping with MS by providing comprehensive support and educational programs.

Disease/Disability Information
Information and Referral
Specialized Information and Referral

Source:	Nationwide Suggest Providers Queue
Last Updated:	1/6/2020

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National Cancer Institute

9609 Medical Center Drive
Bethesda, MD 20892-9760
Phone: 800-422-6237

Service Categories:

www.cancer.gov/

Address: 9609 Medical Center Drive
Bethesda, MD 20892-9760

Phone: 800-422-6237

Fax: (719) 776-3132

Service Categories:

Email: cancergovstaff@mail.nih.gov

URL: https://www.cancer.gov/

Eligibility: None

Wheelchair Accessible: Complete

Services Provided: A free public service of the National Cancer Institute providing the latest most accurate cancer information for patients, their families, the general public, and health professionals in a personalized confidential manner.

Source:	Nationwide Suggest Providers Queue
Last Updated:	1/6/2020

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National Eye Institute

31 Center Dr, MSC 2510
Bethesda, MD 20892-2510
Phone: 301-496-5248

Service Categories:

www.nei.nih.gov/

Address: 31 Center Dr, MSC 2510
Bethesda, MD 20892-2510

Phone: 301-496-5248

Service Categories:

Email: 2020@nei.nih.gov

URL: https://www.nei.nih.gov/

Services Provided: National Eye Institute is the principal agency for conducting and supporting vision research aimed at improving the prevention, diagnosis, treatment and rehabilitation of diseases that affect the eye and vision

Source:	Nationwide Suggest Providers Queue
Last Updated:	1/24/2020

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National Institute of Diabetes and Digestive and Kidney Diseases

3 Information Way
Bethesda, MD 20892-3580
Phone: 800-860-8747

Service Categories:

www.niddk.nih.gov/

Address: 3 Information Way
Bethesda, MD 20892-3580

Phone: 800-860-8747

TDD: 866-569-1162

Service Categories:

Email: healthinfo@niddk.nih.gov

URL: https://www.niddk.nih.gov/

Eligibility: Contact for specific information.

Services Provided: NIDDK research creates knowledge about and treatments for diseases that are among the most chronic, costly, and consequential for patients, their families, and the Nation. Offers clinical trials, financial assistance for researchers, health information, and publications.

Source:	Nationwide Suggest Providers Queue
Last Updated:	7/30/2019

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National Institute on Deafness and Other Communication Disorders

31 Center Dr., MSC 2320
Bethesda, MD 20892
Phone: 800-241-1044

Service Categories:

www.nidcd.nih.gov/

Address: 31 Center Dr., MSC 2320
Bethesda, MD 20892

Phone: 800-241-1044

TDD: 800-241-1055

Service Categories:

URL: https://www.nidcd.nih.gov/

Eligibility: communication disorders

Services Provided: Information specialists provide callers with fact sheets, resources and referrals to other organizations and agencies. Topics include hearing, balance, smell and taste, voice, speech, and language disorders.

Source:	MHP-Nationwide
Last Updated:	1/7/2020

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National Organization for Rare Disorders (NORD)

55 Kenosia Avenue
PO Box 1968
Danbury, CT 06810
Phone: 203-744-0100

Service Categories:

www.rarediseases.org/

Address: 55 Kenosia Avenue
PO Box 1968
Danbury, CT 06810

Phone: 203-744-0100

Toll Free Phone: 800-999-6673

Fax: 203-263-9938

Service Categories:

URL: https://www.rarediseases.org/

Languages Spoken: Spanish

Eligibility: Persons with a rare disease, financial need.

Services Provided: A patient advocacy organization for individuals with rare diseases and the organizations that serve them. NORD provides Patient Assistance Programs that provide financial assistance. In addition, NORD provides links to other financial assistance resources.
Patient Assistance Program, RareCare, provides medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultation with disease specialists.

Source:	MHP-Nationwide
Last Updated:	9/12/2019

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Parent Project Muscular Dystrophy

401 Hackensack Avenue, 9th Floor
Hackensack, NJ 07601
Phone: 201-250-8440

Service Categories:

www.parentprojectmd.org/

Address: 401 Hackensack Avenue, 9th Floor
Hackensack, NJ 07601

Phone: 201-250-8440

Toll Free Phone: 800-714-5437

Fax: 201-250-8435

Service Categories:

Email: info@parentprojectmd.org

URL: https://www.parentprojectmd.org/

Services Provided: Information about Duchenne Muscular Dystrophy for families, including responding to a new diagnosis, finding care, and genetic testing. PPMD’s Decode Duchenne genetic testing program provides free genetic testing and counseling to people in the Duchenne or Becker muscular dystrophy community who otherwise could not afford genetic testing.

Runs Certified Duchenne Care Center Program, which supports standardized comprehensive care for people with Duchenne. Also promotes research and organizes advocacy initiatives.

Source:	MHP-Nationwide
Last Updated:	5/9/2019

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Patient Services Inc (PSI)

PO Box 5930
Midlothian, VA 23112
Phone: 800-366-7741

Service Categories:

www.patientservicesinc.org/

Address: PO Box 5930
Midlothian, VA 23112

Phone: 800-366-7741

Toll Free Phone: 800-366-7741

Fax: 804-744-9388

Service Categories:

Email: psiops@uneedpsi.org

URL: https://www.patientservicesinc.org/

Eligibility: Financial assistance for insured and uninsured patients with chronic illnesses. Assistance is focused on a limited number of around 20 diseases, and the list always changes.

Services Provided: Provides online disease and treatment information as well as limited financial assistance for patients with chronic illnesses who are struggling to keep up with expensive premiums and copayments. Available programs and specific illnesses are regularly updated. Financial assistance includes: subsidizing the cost of health insurance premiums; providing pharmacy and treatment copayment assistance; assisting with Medicare Part D co-insurance; providing travel assistance for transportation reimbursement.

Provider Profiles: Online resources

Source:	MHP-Nationwide
Last Updated:	7/11/2019

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Sickle Cell Disease Association of America, Inc.

7240 Parkway Drive, Suite 180
Hanover, MD 21076
Phone: 410-528-1555

Service Categories:

www.sicklecelldisease.org/

Address: 7240 Parkway Drive, Suite 180
Hanover, MD 21076

Phone: 410-528-1555

Toll Free Phone: 800-421-8453

Fax: 410-528-1495

Service Categories:

Email: admin@sicklecelldisease.org

URL: https://www.sicklecelldisease.org/

Services Provided: National nonprofit with chapters in multiple states. Supports research, public health education, professional health education, patient services, community services, and global organizations.

Provider Profiles: Mission: To advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure.

Source:	MHP-Nationwide
Last Updated:	1/6/2020

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The Childhood RND Educational Foundation, Inc, The Childhood RND Educational Foundation, Inc

PO Box 7762
Wilmington, DE 19803

Service Categories:

stopchildhoodpain.org/

Organization Name: The Childhood RND Educational Foundation, Inc
(Show others in Organization)

Address: PO Box 7762
Wilmington, DE 19803

Service Categories:

URL: https://stopchildhoodpain.org/

Services Provided: The Childhood RND Educational Foundation is a 501(c)(3) non-profit organization dedicated to educating health professionals and families who deal with amplified musculoskeletal pain syndromes (AMPS) such as fibromyalgia, complex regional pain syndrome (CRPS), RSD, RND, neuropathic pain and myofascial pain. Services include:
-Educational materials about a variety of pain issues
-[https://stopchildhoodpain.org/faqs/what-hospitals-offer-this-treatment-program/ Directory of pediatric AMPS treatment programs.]

Source:	MHP-Nationwide
Last Updated:	2/26/2020

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Tourette Association of America

42-40 Bell Blvd Suite 205
Bayside, NY 11361-2820
Phone: 718-224-2999

Service Categories:

tourette.org/

Address: 42-40 Bell Blvd Suite 205
Bayside, NY 11361-2820

Phone: 718-224-2999

Toll Free Phone: 888-486-8738

Fax: 718-279-9596

Service Categories:

Email: support@tourette.org

URL: https://tourette.org/

Services Provided: A national organization serving children, individuals and families affected by Tourette Syndrome (TS) and other tic disorders. Comprehensive online information includes six online CME/CNE programs, programs on Recognition, Diagnosis & Treatment, and training for Allied Professionals and Educators. The website also contains resources for patients and families.

[https://tourette.org/find-a-provider/ Find a Provider]: Directory of experts in Tourette Syndrome that can be filtered by age group, clinical expertise (specialty), and location.

[https://tourette.org/about-tourette/overview/centers-of-excellence/center-excellence-locations/ Tourette Syndrome Centers of Excellence]: List of Centers of Excellence in the care of Tourette Association, recognized by the Tourette Association of America as promoting the highest level of care, research, education & training, and advocacy & awareness for these conditions.

Source:	MHP-Nationwide
Last Updated:	2/4/2020

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