Rare Connections Support groups link

 Virtual Patient & Caregiver Support Groups to provide opportunities for adult patients and for caregivers to come together and share their experiences with others facing similar challenges. 

Rare New England's mission is to bring together New England patients, families and providers touched by rare and complex disorders. We offer educational opportunities, create awareness of available resources,
and build foundations for support to improve patient quality of life. 

Provides objective and credible information, advocacy and research for diabetes. Website offers education, legal rights, health insurance, tips for caregivers, etc. Provides camps for children with Type I diabetes and with or at risk of developing Type II diabetes.

Provide support, resources, education, and advocacy for those who are impacted by low vision and visual impairment.

Promotes quality of life for people with ostomies and continent diversions through information, support, advocacy, and collaboration. Hosts a national network for bowel and urinary diversion support groups in the United States. 

Patients and families of children with congenital heart disease.

Provides ongoing peer-to-peer support, education, and advocacy to heart patients and their families. Local chapter locator available on website.

Services Include:

• peer support and education
• education resources
• hospital outreach
• CHD awareness
• community health education
• online community
• advocacy

Pursuing recognition, policy and solutions for the surging population of individuals, families and caregivers affected by severe forms of autism and related disorders.

Services Include:

• Education to the public
• Platform for policy discourse and services
• Education for policy makers
• Promote research
• Promote awareness and acceptance

Provides support for individuals with genetic aortic and vascular conditions, including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes.

A collaborative network of nonprofits, corporations, and individuals from 39 states and nine countries, supporting and serving the childhood cancer community.  They work together around the interests of: Advocacy, Awareness, Research & Treatment, Family Support, and Survivorship.

The Hope Portal is a searchable database which connects childhood cancer families to the information and vast array of support resources