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
Moyamoya Disease
An adult Moyamoya disease research study is being conducted at Columbia University
Medical Center. The study is called "Outcomes of Revascularization in Moyamoya."
The purpose of this study is to examine the effects of neurosurgery on mental,
psychological, neurological, and daily functions among persons with Moyamoya disease.
People with Moyamoya disease who undergo EDAS neurosurgery and those who do not undergo
neurosurgery can participate in this study. For more information, contact the
investigator, Joanne Festa, PhD, at (212) 305-5860. Dr. Festa is Assistant Professor of
Clinical Neuropsychology at Columbia University College of Physicians & Surgeons.
|
|
|
Over 1200 Disease Reports
Not a Subscriber yet?
Details
Here
|
|
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
 NORD offers
free booklets for physicians and other medical profes-
sionals. To request copies,
or learn how topics are selected,
click here.
|
|
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.
|
|
