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Bleeding Disorders Association
of Northeastern New York (BDANENY), Inc.
Resources
Disclaimer: The Internet addresses contain information created, maintained, or otherwise posted by organizations and persons independent of the Bleeding Disorders Association of NENY, Inc.. The Bleeding Disorders Association of NENY, Inc. does not endorse, approve, or certify any information at such addresses. Reference to any product or service does not constitute endorsement of such product or service by the Bleeding Disorders Association of NENY, Inc..
Bleeding Disorders Web Sites - National / International Organizations
- National Hemophilia Foundation, Inc.
- Information pertaining to bleeding disorders (including hemophilia, von Willebrand Disease,
Factor VII, and Factor XI deficiencies), legislative advocacy, research (gene therapy),
conferences, etc.
- All About Bleeding - Sponsored by Aventis Behring, it is a resource for the education, guidance and support of individuals who have or suspect they have von Willebrand disease. Order a free copy of A Guide to Living with von Willebrand Disease by Renée Paper,
R.N. with Laureen A. Kelley.
- Canadian Hemophilia Society
- Addresses the symptoms, diagnosis, and treatment of bleeding disorders including hemophilia,
von Willebrand Disease, and other coagulation deficiencies including
platelet function disorders.
Excellent diagram depicting normal clot formation.
- World Federation of Hemophilia
- International organization dedicated to individuals with hemophilia worldwide.
- Coalition for Hemophilia B, Inc.
- The Coalition's focus is on improving the future for individuals with hemophilia B
(Factor IX deficiency) through research, development of products, advocacy, and therapeutic treatment.
Government Agencies
Hepatitis
- Hep-C ALERT!
- Information regarding diagnosis, transmission, and treatment of hepatitis C in layman's terms.
Support (web page) for children and/or their family members infected with hepatitis C.
Special section dedicated to veterans.
Questions and answers regarding the Americans with Disabilities Act.
- Hepatitis Foundation International
- Web site dedicated to education, research, and support for individuals afflicted with hepatitis.
Text available in English, French, Spanish, Italian, and Portuguese.
- Hepatitis Place: Hepatitis C Virus
- Information regarding epidemiology and transmission of hepatitis as well as complications of hepatitis.
Other topics include viral load, alcohol consumption, clinical trials, disability, and support.
- Hepatitis Information Network
- Canadian web site dedicated to informing the reader about the various types of hepatitis. Text available in English or French.
- American Liver Foundation
- Information about liver disease, research, advocacy, patients' stories,
and links to other liver-related web sites. Services, activities, and state chapters listed.
HIV / AIDS
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AIDS Clinical Trials Information Service
- (ACTIS) provides quick and easy access to information on federally and
privately funded clinical trials for adults and children.
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Canadian AIDS Society
- This organization is a national coalition of over 100 community-based AIDS organizations across Canada.
- HIV Positive
- Website dedicated to individuals living with HIV.
Nutrition, treatment, pain management, opportunistic infections, diagnostic test,
and occupational exposure are some of the topics included in this web site.
- HIV InSite
- Positive Health Program of the University of California San Francisco Medical Service at San Francisco General Hospital
Medical Center. Website sponsored by serveral pharmaceutical companies.
The site offers medical information, prevention and education,
social issues, statistics and epidemiology, links, access to international information, key topics, and maps.
- HIV and AIDS Info from AEGis
- Non-profit charitable and educational corporation under laws of California.
Grass roots effort has evolved into a service that CDC calls "the best of its kind".
Website focuses on treatment, prevention, the science of HIV, publications, references,
links, news services, and a law library. Updated hourly.
Local Hemophilia Treatment Center
Other
- National Library of Medicine
- Latest information from medical journals available free through the MEDLINE
service of the National Library of Medicine, a part of the National Institutes of Health (NIH).
- Creutzfeldt-Jakob Disease Foundation, Inc.
- Website provides overview of CJD, the nature of the CJD agent, listing of CJD-related conferences/symposiums
and current needs of the research community as well as a collection of CJD-related websites.
- Haemophilia-forum
- Website dedicated to supplying information about haemophilia to medical and health care professionals,
providing an excellent oportunity to interact with world wide specialists in the field of haematology.
- Healthopedia - Healthopedia.com, a medical and health consumer information
resource containing comprehensive and unbiased information in
patient-friendly language from trusted sources on over 1,500 health topics,
70 focussed health centers, and more than 11,000 drugs and medications.
- Free Medline / Free PDR Searches
- Royal Hemophilia Pedigree
Businesses
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