The Yellow Brick Road Project partners with organizations around the world to promote awareness of HNRNPH2 genetic variations and drive research for treatment and a cure of this rare disorder.
YBRP has partnered with Simons Searchlight to further our mission of supporting HNRNPH2 research. How does Simons Searchlight help us do that? By collecting data and bio samples and making this information available to researchers. Find out more here.
COMBINEDBrain, established in 2019, is a consortium led by patient advocacy foundations, working with the clinicians, researchers, and pharmaceutical firms that are developing treatments for the disorders they represent. YBRP is a proud founding member of this alliance, whose mission is to speed the path to clinical treatments for people with severe rare genetic non-verbal neuro-developmental disorders by pooling efforts, studies, and data.
The National Organization for Rare Disorders (NORD)
NORD offers many programs and services for the 280 patient organizations it represents, to help groups just like the YBRP to evolve. Regional meetings connect groups to one another and to pharmaceutical companies, FDA leadership, and the National Institute of Health. YBRP is on the path to NORD membership.
YBRP is a proud member of Genetic Alliance UK, the national charity working to improve the lives of patients and families affected by all types of genetic conditions, an alliance of over 200 patient organisations. Their aim is to ensure that high quality services, information, and support are provided to all who need them and actively support research and innovation across the field of genetic medicine.
FDNA is a company who has artificial intelligence technology able to detect physiological patterns that reveal disease-causing genetic variations. This partnership could help the YBRP in its mission to identify more individuals with HNRNPH2 mutations, faster.