The National Organization for Rare Disorders (NORD)

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

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

 

Research

Primary Lateral Sclerosis

In the Neuromuscular Disorders Program at Northwestern University Medical School, a study is underway of the cause(s) of sporadic (non-inherited) diseases of the motor neurons, such as primary lateral sclerosis. The research team hopes to determine whether genetic factors may predispose an individual to a disease such as PLS and whether sporadic motor-neuron diseases may be the result of not one but several genetic factors.

Blood samples from patients and their living parents, brothers, and sisters are needed for this study. Two tablespoons of blood are needed from each participant. The research team will supply tubes and instructions. Samples may be drawn near the patient's home.

Anyone interested in learning more about this study should contact Nailah Siddique, RN, MSN, clinical nurse specialist, (312) 503-2712 , nsiddique@nwu.edu, or Teepu Siddique, MD, Director of the NWU Neuromuscular Disorders Program.

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ABOUT | CONTACT NORD

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

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

Free Booklets For PhysiciansNORD 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.

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Last modified Thursday, December 10, 2009