CGD and severe, malignant osteopetrosis are rare conditions, and some communities may not have resources on hand to help with diagnosis, assessment, treatment, and patient education. Call on the organizations below to get the support you need to help you make informed decisions.
InterMune Medical Information
InterMune Medical Information Services is staffed by a team of clinically trained pharmacists who can answer questions from US healthcare providers and patients. We are dedicated to providing high-quality service to our customers based on the most accurate and timely medical information about our products and/or the diseases they treat.
To contact Medical Information by phone for specific product information, please call (888) 486-6411.
CGD Registry
The Jeffrey Modell Foundation sponsors a unique resource for healthcare professionals: the Chronic Granulomatous Disease Registry. To learn how you can register your patient, call the registry at (800) 533-3844.
Jeffrey Modell Foundation
747 Third Ave, 34th Floor, New York, NY 10017
Tel: 800-533-3844
Email: info@jmfworld.org
http://www.jmfworld.org
Chronic Granulomatous Disease Registry
c/o Immune Deficiency Foundation
25 West Chesapeake Avenue, Room 206, Towson, MD 21204
Tel: 800-296-4433
http://www.primaryimmune.org
ACTIMMUNE® Access Hotline
InterMune, Inc. is committed to providing services that make access to ACTIMMUNE® as simple and easy as possible. As part of this commitment, the ACTIMMUNE® Access Hotline offers physicians, office staff, and patients access to patient support services and reimbursement specialists who can answer important questions about ACTIMMUNE®.
The Hotline also provides telephone access to nurses and pharmacists, and to prescription services that include overnight shipping of medication to physicians or patients at no additional cost.
ACTIMMUNE® Access Hotline
Toll-free: (877) 305-7704
Fax: (877) 305-7706
- Prescribing Information (pdf file)
- Medication Guide (pdf file)
Links to resources on the Web
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
Jeffrey Modell Foundation
747 Third Ave, 34th Floor, New York, NY 10017
Tel: 800-533-3844
Email: info@jmfworld.org
http://www.jmfworld.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
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
Clinical trials
Clinicaltrials.gov is a listing of Government- and industry-sponsored clinical trials. The Web site is designed to provide patients, family members, and members of the public current information about clinical research studies. This Website includes information about clinical trials and a clinical trials listing.
http://www.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
Links to further research
PubMed is a bibliographic database of biomedical journal literature. This database is maintained by the National Library of Medicine. Click on the link to search PubMed for relevant journal articles. Copy and paste the disease name and/or synonym(s) for your search. Please note that PubMed citations contain summaries but not the full text of journal articles.
http://www.pubmed.gov
GHR is a Web site of consumer information about genetic conditions and the genes or chromosomes responsible for those conditions. This database is maintained by the National Library of Medicine.
http://ghr.nlm.nih.gov/
The OMIM database is a catalog of published scientific research relating to medically important human genes, traits, and genetic disorders. The site was developed by the National Center for Biotechnology Information (NCBI). The database contains textual information and references. Please note that OMIM citations contain summaries but not the full text of journal articles.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=OMIM
The Combined Health Information Database (CHID) is a bibliographic database produced by agencies of the National Institutes of Health. This database provides titles, abstracts, and availability information for health information and health education resources. Please note that CHID contains summaries but not the full text of materials.
http://chid.nih.gov/about.html
