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.
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Research
Risk Factors in Autoimmune Disease
A new unit of the National Institute of Environmental Health Sciences, called
the Environmental Autoimmunity Group (EAG), has been established in Bethesda,
MD, at the NIH to conduct pioneering research in understanding the genetic and
environmental risk factors that may result in autoimmune disease.
The EAG is currently enrolling families in which an adult or child meets criteria
for rheumatoid arthritis/juvenile rheumatoid arthritis, systemic lupus erythematosus,
systemic sclerosis, or myositis and in which a twin or sibling of the same gender,
who is within 47 months of age, does not have any one of these four illnesses
or another autoimmune disease. Subjects may enroll at the NIH Clinical Center
in Bethesda or in their local doctors' offices. Patients remain under the care
of their personal physicians while participating in the study. There is no charge
for study-related evaluations and medical tests at the NIH.
For information about the NIH Twin-Sibs Study, call 1-800-411-1222.
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Over 1200 Disease Reports
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Since 1983, working toward the prevention, treatment, and cure of rare
“orphan” diseases.
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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
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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.
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