Connect with patient groups who understand your journey
Connect with organizations that understand your journey.
Each group is verified to help you connect with confidence.
Organizations keep their identity even when websites change.
Search by your condition, organization name, or location
RDCP:PAG0000228
Creating a community for those affected by 17q12 syndromes while raising awareness and encouraging research.
1p36 Deletion Support & Awareness provides support, awareness, and education for individuals affected by 1p36 deletion syndrome, aiming to improve their lives and reach more families in need.
RDCP:PAG0000288
A supranational European network of 14 national organizations aiming to bring awareness to the 22q11 deletion syndrome and support affected individuals and families.
RDCP:PAG0000287
The 22q Center at Nationwide Children's Hospital offers support and treatment for children affected by 22q Deletion Syndrome.
The 22q Family Foundation supports individuals and families affected by 22q differences by providing resources, educational programs, and scholarships to help them navigate challenges and achieve their goals.
RDCP:PAG0000296
Supports patients and families affected by 22q11.2 Deletion Syndrome.
RDCP:PAG0000286
22q11 Ireland provides lifelong support for those impacted by 22q11 Deletion Syndrome, focusing on patient support and community engagement.
RDCP:PAG0000297
The 22q11.2 Clinic provides expert medical care for children with 22q11.2 deletion syndrome and duplication, focusing on a comprehensive team approach to care.
RDCP:PAG0000001
To support families affected by 3q29 deletion and duplication syndromes through advocacy, research, and community building.
The 4p- Support Group is a non-profit organization that provides support, information, and education to families and individuals affected by 4p- and Wolf-Hirschhorn Syndrome.
The 5P- Society is a support organization for individuals with 5p- Syndrome (Cri du Chat Syndrome), providing awareness, education, and support for families, educators, and medical professionals.
A Cure In Sight is an independent organization that provides support and resources for patients diagnosed with ocular melanoma, focusing on education, community support, and funding research for treatment advancements.
The AADC Family Network supports families affected by Aromatic L-Amino Acid Decarboxylase Deficiency (AADC) by providing resources, funding, and raising awareness for the disease.
RDCP:PAG0000013
To support families affected by ADCY5-related movement disorder, encourage research, and collect information about this rare genetic condition.
The ADNP Kids Research Foundation is dedicated to improving the lives of children and adults affected by ADNP Syndrome by funding research for treatments and a cure, while also providing support and advocacy for families.
RDCP:PAG0000015
The ALD Alliance is a non-profit organization focused on supporting families affected by Adrenoleukodystrophy (ALD) through education, advocacy, and resources for newborn screening and family support.
ALD Connect is a non-profit organization dedicated to improving health outcomes for individuals affected by adrenoleukodystrophy (ALD) through patient empowerment, research advancement, and community support.
ALD Hope raises awareness and provides support for individuals and families affected by Adrenoleukodystrophy (ALD) and Addison's disease through financial assistance, educational resources, and advocacy for early detection.
RDCP:PAG0000008
The ALS Association is the only national nonprofit organization fighting ALS on every front.
The ALS Network provides support, advocacy, and resources for individuals and families affected by ALS, focusing on improving health outcomes and funding research for better treatments and cures.
Join our directory to help patients and families find you. Registration is free and takes just a few minutes.