Partners

The Alliance of Genetic Etiologies of Neurodevelopmental Disorders and Autism (AGENDA) is a collaboration of many patient advocacy groups representing rare genetic conditions associated with neurodevelopmental disorders.

Learn more​

The Bohring-Opitz Syndrome (BOS) Foundation provides support to families living with Bohring-Opitz Syndrome, including a scholarship program to fund adaptive equipment, home modifications, and other financial needs. They also host a family meet-up every other year in the Philadelphia area.

Learn more

The Consortium for Outcome Measures and Biomarkers for Neurodevelopmental Disorders (COMBINEDBrain) is a non-profit organization devoted to speeding the path to clinical treatments for people with rare genetic neurological disorders by pooling efforts, studies, and data.

Learn more

DEE-P Connections is a consortium of patient advocacy organizations that represent conditions with severe Developmental & Epileptic Encephalopathies (DEEs). Through our partnership with DEE-P Connections and its member groups, we are bringing the ASXL community better access to information about severe epilepsies and related conditions. DEE-P Connections has a robust resource library and a growing calendar of virtual family education events related to medical management.

Learn more

Global Genes connections the rare disease community around the world. As member of the Global Advocacy Alliance, we are part of a coalition of over 700 nonprofit patient advocacy organizations. This partnership provides us with access to additional funding opportunities and educational programs hosted by Global Genes, as well as invaluable connections to other rare disease organizations with similar missions.

Learn more

The JumpStart Program, a project of the Orphan Disease Center at the University of Pennsylvania’s School of Medicine, partners with rare disease organizations to provide scientific advising and connections to the research community.

Learn more

Leo’s Lighthouse is a family-led organization that raises funds for research for Bainbridge-Ropers Syndrome.

Learn more

NORD is a source of resources and connections for the entire rare disease community. As a NORD member organization, we use NORD’s capacity-building resources to expand our work using best practices defined by other rare disease nonprofits. NORD also offers financial assistance programs for individuals living with rare disease.

Learn more

The Overgrowth Syndromes Alliance (OSA) is a united group of patient advocacy organizations representing a range of overgrowth disorders. OSA’s mission is to align the interests and resources of overgrowth syndrome patient advocacy organizations and prioritize research for treatments and cures, especially those benefiting the greatest number of patients. The ARRE Foundation is part of the OSA on behalf of the Shashi-Pena Syndrome (ASXL2) community.

The Rare Epilepsy Network (REN) is a consortium of rare disease patient advocacy groups whose conditions include epilepsy. REN’s mission is to work with urgency to collaboratively improve outcomes of rare epilepsy patients and families by fostering patient-focused research and advocacy.

Learn more

The Research Acceleration and Innovation Network (TRAIN), a program within Milken Institute Health, comprises established patient foundations interested in taking a strategic and entrepreneurial approach to funding medical research. TRAIN convenes forward-thinking groups to learn from each other and share their novel solutions with the rest of the medical research system.

Learn more