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Levy-Yeboa Syndrome (LYS), an STXBP3-Associated Disease Research

National Organization for Rare Disorders(NORD)

About NORD

The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases. NORD is committed to the identification, treatment and cure of the more than 7,000 rare diseases, of which approximately 90 percent are still without an FDA-approved treatment or therapy. Rare diseases affect 25-30 million Americans. More than half of those affected are children. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. For more than 35 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.

Specialties

Rare Diseases

Eligibility Requirements

All are eligible

Eligible Countries:

Sponsor Details

Sponsor Institute/Organizations: National Organization for Rare Disorders(NORD)

Sponsor Type:

Address: 1779 Massachusetts Avenue; Suite 500; Washington; DC 20036;United States

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