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.
The Global Advocacy Alliance is a global community of non-profit organizations and support groups who are committed to changing the way the world tackles rare diseases by collaborating to realize positive change. Together, members can connect, empower and inspire the rare disease community.
The mission of St. Jude Children’s Research Hospital is to advance cures, and means of prevention, for pediatric catastrophic diseases through research and treatment. Consistent with the vision of our founder Danny Thomas, no child is denied treatment based on race, religion or a family's ability to pay.
Columbia University Irving Medical Center (CUIMC) provides international leadership in basic, preclinical, and clinical research; medical and health sciences education; and patient care. The medical center trains future leaders and includes the dedicated work of many physicians, scientists, public health professionals, dentists, and nurses at the Vagelos College of Physicians and Surgeons, the Mailman School of Public Health, the College of Dental Medicine, the School of Nursing, the biomedical departments of the Graduate School of Arts and Sciences, and allied research centers and institutions. CUIMC is home to the largest medical research enterprise in New York City and State and one of the largest faculty medical practices in the Northeast.