NIH/National Institute of Allergy and Infectious Diseases (NIAID)
NIAID conducts and supports research on a wide range of allergic, immunologic, and infectious diseases. Doctors and scientists at the NIH Clinical Center in Bethesda, Maryland, are continuing to search for effective treatments for immunologic disorders such as CGD.
9000 Rockville Pike, Building 31A
Bethesda, MD 20892
Tel: (301) 496-5717
www.niaid.nih.gov
NORD, a 501(c)(3) organization, is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
55 Kenosia Avenue
P.O. Box 1968
Danbury, CT 06813-1968
Tel: (203) 744-0100
Voicemail: (800) 999-6673
TDD: (203) 797-9590
Fax: (203) 798-2291
www.rarediseases.org
CORD provides education and support, offering information on thousands of rare disorders. The organization also advocates for funding and research.
P.O. Box 814
Coaldale, Alberta, Canada T1M 1M7
Tel: (403) 345-4544
Toll-free: (877) 302-7273
Fax: (403) 345-3948
www.cord.ca
EURORDIS is a patient-driven alliance of patient organizations and individuals active in the field of rare diseases. EURODIS is dedicated to improving the quality of life of all people living with rare diseases in Europe.
Plateforme Maladies Rares
102, rue Didot
75014 Paris, France
Tel: +33 (1) 56.53.52.10
Fax: +33 (1) 56.53.52.15
www.eurordis.org
The Paget Foundation is a national voluntary health agency that provides information on Paget's disease and other bone disorders, including primary hyperparathyroidism, fibrous dysplasia, and osteopetrosis, and the effects of certain cancers on the skeleton, to patients, family members, and health professionals. The foundation provides publications on all of these disorders, plus physician referral lists for Paget's disease, primary hyperparathyroidism, fibrous dysplasia, and osteopetrosis.
120 Wall Street
New York, NY 10005
Tel: (212) 509-5335
Toll-free: (800) 237-2438
Email: pagetfdn@aol.com
www.paget.org
Links to resources on the Web
InterMune, Inc.
Home page of InterMune, the manufacturer of ACTIMMUNE®
http://www.intermune.com
Chronic Granulomatous Disease Association, Inc.
2616 Monterey Road, San Marino, CA 91108
Tel: 626-441-4118
Email: cgda@socal.rr.com
http://www.cgdassociation.org
Immune Deficiency Foundation
40 West Chesapeake Avenue, Suite 308, Towson, MD 21230
Tel: 800-296-4433
Email: jb@primaryimmune.org
http://www.primaryimmune.org
Jeffrey Modell Foundation
747 Third Ave, 34th Floor, New York, NY 10017
Tel: 800-533-3844
Email: info@jmfworld.org
http://www.jmfworld.org
NIH/National Institute of Allergy and Infectious Diseases
9000 Rockville Pike, Building 31A, Bethesda, MD 20892
Tel: 301-496-5717
http://www.niaid.nih.gov
Chronic Granulomatous Disorder Research Trust
The CGD Office
Manor Farm, Wimborne St Giles
Dorset, Intl BH21 5NL, United Kingdom
Email: cgd@cgdrt.co.uk
http://www.cgd.org.uk
Clinical trial information
Clinicaltrials.gov is a listing of government- and industry-sponsored clinical trials. The Web site is designed to provide patients, family members, and the public current information about clinical research studies. This Web site includes information about clinical trials and a clinical trials listing.
http://clinicaltrials.gov
CenterWatch.com is a free, open resource for professionals and patients who are interested in participating in clinical trials. The site provides up-to-date listings on more than 40,000 clinical trials now in process. This includes both government- and industry-sponsored studies, and descriptions of the therapies being studied. Listings can be searched by location and medical specialty. http://www.centerwatch.com
