Partnerships (INCLUDE LOGOS)
CDCRF is partnering with Citizen Health to launch a 5p- syndrome Digital Natural History Study to accelerate 5p- syndrome research, prepare for clinical trials, and support families in their care journey. (Insert Citizen logo here)
Global Gene’s purpose is to connect, empower, and inspirate the rare disease community. CDCRF is grateful for their leadership. (Insert Global Genes logo here)
The CombinedBrain mission is to identify and discuss biomarkers and outcome measures for rare brain disorders, with a specific focus on non-verbal neurodevelopmental disorders.
The mission of AGENDA is to improve outcomes of individuals with all forms of autism by fostering a genetics-first approach to autism research, and by strengthening collaborations among organizations representing genetically-defined disorders associated with autism. (insert AGENDA logo here)
Simons Searchlight is an initiative of SFARI that aims to better understand genetic neurodevelopmental conditions, specifically those associated with autism spectrum disorder. (insert Simons Searchlight logo here)
The Rare Epilepsy Network (REN) is a partnership between rare epilepsy organizations, the Epilepsy Foundation, Columbia University, and Research Triangle International to conduct research to improve outcomes of rare conditions associated with epilepsy and seizures.
The JumpStart Program to establish and progress research agendas in emerging and neglected rare diseases. The JumpStart program works closely with patient groups and foundations, pharma and biotech, and the academic community to drive therapeutic development for rare diseases.
Autism BrainNet promotes innovative, high-quality research on postmortem brain tissue with the goal of improving the understanding of the biological causes of autism spectrum disorder (ASD) and related neurodevelopmental conditions.
Genetic Alliance is the world’s leading nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities.
Courageous Care Network to empower, support and equip families and providers caring for children with serious illness. Families have confidence in their ability to be the best caregivers they an possibly be, resulting in minimal regret and maximal healing.
5p- syndrome
5P- Society
ABC Associazione Bambini Cri du Chat
Sindrome 5p-
Cri du Chat Awareness Club