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Natural Histories Patient Registry

To address the special needs of those developing treatments for rare diseases, NORD has created a Natural Histories Patient Registry Platform, with extensive input from FDA and NIH. The first disease-specific registry was launched in the summer of 2014 with the VHL Alliance.

In 2015, NORD was awarded with a $250,000 grant to develop more registries to support better understanding of rare diseases and the research and drug development processes. Twenty rare disease patient groups were chosen in 2016 to work with NORD on the development of registries for their patient communities.


Natural Histories Patient Registry


Learn how you can support and benefit from this groundbreaking initiative by contacting

Adult Polyglucosan Body Disease (APBD) Research

Adult Polyglucosan body disease research foundation

APS Type 1 Foundation

aps type 1 foundation

Bridge the Gap-SYNGAP Education and Research Foundation

bridge the gap syngap education and research foundation

CCHS Family Network

cchs famil network

Congenital Hyperinsunilism International


Desmoid Tumor Research Foundation

desmoid tumor research foundation

FD/MAS Registry

Fibrous Dysplasia Foundation

Galactosemia Foundation

galactosemia foundation for peroxisomal disorders

Global Foundation for Peroxisomal Disorders


Global Prader-Willi Syndrome Registry

Foundation for Prader Willi Research

Hereditary Neuropathy Foundation

hereditary neuropathy foundation

International Pemphigus & Pemphigoid


Lipoprotein(a) Foundation

lipoprotein(a) foundation

LPLD Patient Registry


National PKU Alliance


Organic Acidemia Association

organic acidemia association

Pitt Hopkins Research Foundation

pitt hopkins research foundation

Platelet Disorder Support Association

platelet disorder support association

Scleroderma Research Foundation

scleroderma reserach foundation

The Morgan Leary Vaughan Fund

morgan leary vaughn fund

The OMSLife Foundation

oms life foundation

The Sjögren-Larsson Syndrome (SLS) Network Community Registry


United Leukodystrophy Foundation

united leukodystrophy foundation

von Hippel-Lindau (VHL) Patient Databank

VHL Alliance

Worldwide Syringomyelia & Chiari Task Force

worldwide syringomyelia and chiari task force

XLH Network, Inc.

xlh network