The STXBP1 Foundation is a NORD Platinum Member organization

The STXBP1 Foundation has been accepted as a Platinum level Member of the National Organization for Rare Disorders (NORD)! Platinum level Membership represents the highest level of integrity and transparency for patient advocacy organizations involved in medical research, drug development, medical education, and registries. NORD’s rigorous qualification criteria for Platinum membership are outlined here.

As a newly approved platinum member, the STXBP1 Foundation will actively join in and can leverage multiple opportunities to work alongside the more than 300 other patient organization members who are committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. Check out our new member entry.

NORD is the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States. NORD is committed to the identification, treatment and cure of more than 7,000 rare diseases, of which approximately 90% are still without an FDA-approved treatment or therapy. Rare diseases affect over 25 million Americans. More than half of those affected are children.

For 37 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies and education, advancing medical research and providing patient and family services for those who need them most. NORD is made strong together with over 300 disease-specific member organizations and their communities and collaborates with many other organizations on specific causes of importance to the rare disease patient community. Visit rarediseases.org.