Community Groups

AANE provides community, resources, and supports to individuals and families with autism spectrum disorder and other forms of neurodiversity.

ACHA provides community and support for adults living with CHDs.

The ASA is a community of people living with Alagille Syndrome and their family members.

Angel Aid supports the caregivers who take care of loved ones with chronic illnesses.

The ARC promotes and protects human rights for people with disabilities.

Autism Speaks provides advocacy, education, activities, and resources for people with autism spectrum disorder, and the people who love them.

Ben's Friends is a network of supportive communities for families living with chronic illness.

The Brazelton Touchpoints Center offers trainings and resources to families and professionals. They are committed to empower families, and helping young children to live happily and healthily.

These Centers are located across the US, and offer resources to parents, children, and professionals.

The CHARGE Syndrome Foundation elevates the lives of people with CHARGE Syndrome with education, services, and advocacy.

A community dedicated to ensuring the educational rights of students with disabilities.

The Children's Heart Foundation promotes research in the prevention and treatment of CHDs.

The CHD Coalition works to improve the lives of children and adults living with CHDs. They organize recreational events, and promote outreach.

A parent-led organization that connects and supports people with rare chromosomal disorders.

This group supports the heterotaxy community through education, supporting research and creating opportunities for personal connection.

This surgical society promotes collaboration and research on best practices in treating patients with CHDs.

The Dane Foundation plans recreational events and programs for people with disabilities and their families.

The Every Life Foundation empowers the rare disease community. They bring people together to promote advocacy and legislative change.

This Foundation is devoted to empowering patients, and ensuring they have access to information and services.

Family Voices is a national, family-led network of caregivers who are raising kids with disabilities. They provide support and connection.

The Federation provides information, guidance, and services to families to help them get what they need for their children with disabilities.

Global Genes is a worldwide community of people affected by rare disease. They offer information, resources, and connections.

Hopeful Hearts supports families with CHDs through direct assistance, education, and funding early detection programs.

IndoUS Rare unites the Indian and US rare disease communities with patient groups, research, and education.

Informing Families supports families of children with disabilities as they navigate decisions and transitions from birth through adulthood.

It's My Heart New England organizes recreational and educational events, and raising money to support CHD research.

Kids with Heart provides resources, support, and community connections for people affected by CHDs.

This Foundation empowers community members and collaborates with experts to drive research to treatments for Kabuki syndrome.

Little Hearts is a community of families affected by CHDs, who offer each other understanding and resources.

Little Hearts Big Love is a community of parents grieving the loss of their heart warrior. It provides fellowship and hope.

Living with Tube Feeding is a source of practical information and support for families and patients relying on tube feeding.

NDSC works to further the wellbeing of people with Down Syndrome through advocacy, research, education, and recreation.

NDSS empowers people with Down Syndrome through research, public engagement, education, and advocacy.

NIDCAP promotes the wellbeing of newborns through developmental care. It offers resources and community to both professionals and families.

The Noonan Syndrome Foundation provides advocacy, education, and support to all those affected by Noonan Syndrome.

NORD promotes meaningful change in care, policy, and research to help people with rare diseases live their best life.

The Oley Foundation serves people who rely on IV nutrition or tube feeding. They offer support groups, guidance, and education.

Effie Parks leads a virtual community of parents and patients who are living with rare disease. She has a podcast, a blog, and participates in live events.

One Rare supports young adults living with rare diseases, through education, mentoring, and peer support.

Our Odyssey brings together young adults living with chronic disease, to provide them with emotional and social support.

Rare Disease Day hosts events that builds community and visibility among the rare disease community.

Remexer is a Spanish-language support community for people living with rare disease, and the people who love them.

The Sibling Support Project offers education, trainings, and recreational opportunities to the healthy siblings of children with serious illnesses.

Sisters By Heart provides support, education, and empowerment to individuals and families impacted by single ventricle heart disease (SVHD), from the time of diagnosis through their journey.

SOFT serves families of children diagnosed with Trisomy 13, Trisomy 18, and related chromosomal disorders.

Tiny Tickers provides support and information to parents and professionals who care for children with CHDs.

Transplant Families provides peer support and information to families affected by pediatric organ transplant.

This community offers understanding, connection, and advocacy for families who have a child with Trisomy 18.

Tubie Friends is a community of families who use tube feeding. They provide fellowship, practical guidance, and support.

The Turner Syndrome Foundation brings together families affected by Turner Syndrome, through advocacy, education, and events.

This Society plans support groups that create lasting friendships among people who understand the journey of living with Turner Syndrome.

We Are Brave Together is a group of moms who support each other while raising children with disabilities and unique needs.

The Williams Syndrome Foundation provides programs, resources, and peer support to families affected by Williams Syndrome.

This Foundation provides networking and support to families living with Williams Syndrome.

YL Hearts provides education, support, and resources to families affected by complex CHDs.

The 22q11 International Foundation is dedicated to serving people with 22q11 Deletion Syndrome, through advocacy, research, and solidarity.

2Hearts provides support and education for families with CHDs in the Denver, CO area.

Professionals and families working together to improve the outcomes of children living with heart failure.

YL Hearts provides education, support, and resources to families affected by complex CHDs.

The 22q11 International Foundation is dedicated to serving people with 22q11 Deletion Syndrome, through advocacy, research, and solidarity.