Disease Information from NORD, National Organization for Rare Disorders, Inc.

The National Organization for Rare Disorders (NORD)

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• Database Subscriptions

Many libraries, schools, universities, and hospitals subscribe to NORD’s Rare Disease Database for unlimited access to reports on more than 1,200 diseases.

• Index of Rare Diseases

This is the list of diseases currently covered in the Rare Disease Database.

• Rare Disease Database

Search this database for reports on more than 1,200 diseases.

View sample report

• Index of Organizations

This is the list of organizations in NORD’s Organizational Database.

• Organizational Database

Read about more than 2,000 patient organizations and other sources of help.

NORD's
Washington Office
Read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.

Research

Sturge-Weber Syndrome

Several studies to increase the understanding of Sturge-Weber syndrome are currently being conducted at the Sturge-Weber Syndrome Center at Johns Hopkins Kennedy Krieger Institute in Baltimore. Parents of infants and children with this syndrome, or of children suspected of having it, may obtain more information by contacting Anne Comi, MD, at (410) 614-5807 or acomi@jhmi.edu or Laura Hatfield at lhatfiel@jhmi.edu. One of the studies is a web-based survey. It can be accesssed here.

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Since 1983, working toward the prevention, treatment, and cure of rare “orphan” diseases.

Orphan Products

Patient Recruitment for Projects Funded Through the U.S. Food and Drug Administration Office of Orphan Products Development

Previous Clinical Trials
These studies were listed earlier on this page. Contact the researchers if you would like to know whether they are still recruiting.

CADASIL
Pelizaeus-Merzbacher Disease
Platelet Disorders
ARVC/ARVD
Immune Thrombocytopenic Purpura
Sturge-Weber Syndrome
Brain Metastases Originating from Breast Cancer
Duplication 12p
Rheumatoid Arthritis/Juvenile Rheumatoic Arthritis, Lupus, Scleroderma or Myositis
Moyamoya Disease
Prader-Willi Syndrome
Larsen Syndrome Registry and Web Site
Primary Liver Cancer
Risk Factors in Autoimmune Disease
Neuroendocrine Unit Studies at MGH
Congenital Lactic Acidosis
Hereditary Angioedema
NINDS Physicians Study Fabry's Disease
Inherited Bone Marrow Failure Disorders
Genzyme Recruiting Patients for Dose Frequency Study
Fabry Disease
Primary Ciliary Dyskinesia
Neurofibromatosis Type I
Primary Lateral Sclerosis
FENIB
Alkaptonuria
Behcet's Disease
Infantile Neuronal Ceroid Lipofuscinosis (INCL)
Turner Syndrome

Free Booklets For Physicians

NORD offers free booklets for physicians and other medical profes-
sionals. To request copies, or learn how topics are selected,
click here.

Networking Program

If you would like to participate in our Networking Program, become a member of NORD.

Database Subscriptions

Subscriptions make it possible for institutions, such as libraries, schools, universities, and hospitals, to provide access to all the information in NORD’s databases. Get your subscription today.

Last modified Thursday, December 10, 2009