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
CureSHANK is dedicated to accelerating treatments and finding a cure for Phelan-McDermid Syndrome (PMS) by funding research and fostering collaborations among families, researchers, and industry.
CureSearch is a nonprofit organization dedicated to ending children's cancer by funding innovative research and developing safe and effective treatment options for pediatric cancers.
CureDuchenne is dedicated to curing Duchenne muscular dystrophy through innovative venture philanthropy, funding research, and providing education and support for affected families.
RDCP:PAG0000061
The Curing Retinal Blindness Foundation supports individuals affected by CRB1-related retinal diseases through research funding and resource connection.
RDCP:PAG0000063
The Cushing's Support & Research Foundation provides resources, support, and information for individuals affected by Cushing's syndrome, including patient stories, doctor recommendations, and caregiver support.
The Cutaneous Lymphoma Foundation provides support and resources for individuals affected by cutaneous lymphomas, including information on diagnosis, treatment options, and patient support services.
RDCP:PAG0000064
The Cute Syndrome Foundation supports individuals affected by SCN8A, a rare genetic disorder, by funding research, providing family support, and organizing community events.
The Cyclic Vomiting Syndrome Association (CVSA) supports individuals affected by cyclic vomiting syndrome (CVS) by raising awareness, providing education, and funding research initiatives.
RDCP:PAG0000007
The mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis and to provide all people with CF the opportunity to lead long, fulfilling lives.
CFRI is a nonprofit organization that funds innovative cystic fibrosis research and offers education, advocacy, and psychosocial support programs to those affected by cystic fibrosis.
RDCP:PAG0000065
The Cystinosis Research Foundation supports individuals affected by cystinosis through research funding, community support, and educational resources.
The DADA2 Foundation is dedicated to supporting patients and families affected by the rare genetic disease DADA2, facilitating research, and providing resources to improve understanding and treatment of the condition.
DBAS UK is a charity dedicated to supporting families affected by Diamond Blackfan Anaemia Syndrome through resources, community support, and funding research for better treatments.
RDCP:PAG0000067
The DCM Foundation supports individuals affected by Dilated Cardiomyopathy (DCM) through education, genetic testing, and patient support services.
DDC Clinic is a non-profit organization dedicated to enhancing the quality of life for individuals with rare genetic disorders through personalized patient care, research, and education.
RDCP:PAG0000068
The DDX3X Foundation is dedicated to advancing research and providing support for individuals affected by DDX3X Syndrome, a rare genetic condition that primarily impacts girls and is linked to various intellectual disabilities.
RDCP:PAG0000071
DESSH is a patient advocacy group supporting patients and caregivers affected by DeSanto-Shinawi Syndrome, a rare neurodevelopmental genetic syndrome.
The DHPS Foundation focuses on identifying and assisting individuals with rare genetic disorders, particularly DHPS deficiencies, while collaborating with researchers to develop treatment options.
RDCP:PAG0000073
The DLG4 SHINE Foundation supports families affected by DLG4-related Synaptopathy, an ultra-rare genetic disease, while advancing research to find effective treatments.
The DRESS Syndrome Foundation is dedicated to supporting patients and families affected by DRESS Syndrome, a severe drug reaction, while educating the public and advocating for research and treatment.
Join our directory to help patients and families find you. Registration is free and takes just a few minutes.