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
Platelet Disorders
A study of platelet disorders is being conducted at the National Institutes of Health (NIH). Adults and
children with any of the following conditions may be eligible to participate: gray platelet syndrome, Hermansky-Pudlak
syndrome, storage pool deficiency, Chediak-Higashi syndrome, Griscelli syndrome, Wiskott-Aldrich syndrome, and
thrombocytopenia absent radius syndrome. The researchers hope that study of the causes of these syndromes and related
disorders will lead to improved therapies in the future. For information, call the NIH Patient Recruitment Office at
(800) 411-1222 (TTY: 866-411-1010).
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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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Database Subscriptions
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universities, and hospitals, to provide access to all the information in NORD’s databases.
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