Resources for families are available from the following organizations. Please click on the image to be redirected to the organization’s website!
Autism Speaks is an autism advocacy organization in the United States that sponsors autism research and conducts awareness and outreach activities aimed at families, governments, and the public.
Simons Searchlight (previously known as Simons VIP) – is an online community that supports families with rare genetic changes (also called “genomic variants”) associated with features of autism and developmental delay. VIP provides access to resources, information, and family support. Dr. Wendy Chung is the Principal Investigator (PI) of Simons Searchlight.
Dr. Jennifer Bain at Columbia University Medical Center is currently collaborating with Dr. Wendy Chung – Simons Searchlight on her natural history study of HNRNPH2-related disorders. Columbia University and Simons Searchlight are utilizing bidirectional data sharing of families of children with a confirmed variant in the HNRNPH2 gene to facilitate greater depth and breadth of clinical and genetic data.
Please click here to learn more about our natural history study.
SPARK, or “Simons Foundation Powering Autism Research for Knowledge”, is a landmark autism research project of the Simons Foundation. SPARK works with research partners from all over the world to engage families and adults with autism in research studies.
Global Genes® is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon®. What began as a grassroots movement in 2009 , with just a few rare disease parent advocates and foundations has since grown to over 500 global organizations.
There is a family support and collective group on Facebook called HNRNPH2 Mutations, which can be found here. The private group is a “community for discussion patients with mutations in the HNRNPH2 gene,” and can provide a forum for questions, communication, and friendships between families affected by this rare disease.