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
Prader-Willi Syndrome
Recruitment is currently underway for children with a diagnosis of Prader-Willi
syndrome to participate in a magnetic resonance brain imaging (MRI) study being
conducted by researchers at the University of California at Los Angeles and
Children's Hospital in Los Angeles. Heart rate, blood pressure, and breathing
will be recorded as the brain is being scanned. The scanning, which will be
performed at UCLA Medical Center, will take approximately three hours, and subjects
will need to prepare for the scan at home on the night before. No radiation
or drugs are involved. Compensation of $300 is offered. For information, contact
any of the following members of the research team: Ronald M. Harper, PhD, UCLA
(310) 825-5303; Mary Woo, DNSc, UCLA (310) 206-2032; or Thomas Keens, MD, Children's
Hospital, Los Angeles, (323) 669-2101.
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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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