1. National Hemophilia Foundation News, research, programs and resources.Category Health Conditions and Diseases hemophilia Organizations...... http://www.hemophilia.org/

Click here to read the latest news! (Sign up to to receive the latest news via e-mail!) VWD Makes the Evening News! CBS-2 New York recently aired a special health report featuring two women with von Willebrand Disease. The station is continuing to show the report over the CBS-2 New York Web site ( click here ), along with additional information about VWD and a link to NHF's own Project Red Flag site . Project Red Flag, Real Talk about Women's Bleeding Disorders, is made possible with support from Aventis Behring and the Centers for Disease Control and Prevention (CDC). Help Us Find a Cure Click here to learn more about NHF's efforts to find a cure for bleeding disorders. Click here to view the video for our It's Time for a Cur e campaign. Are You a Winner? Click here to see the winners of our Superhero Contest. The contest is just one of the fun things that NHF's youth Web site, NHFyouthworld.org

2. Hemophilia NHF's youth Web site, NHFyouthworld.org has to offer. National hemophilia Foundation. 116 West 32nd Street, 11th Floor http://www.hemophilia.ca/

3. Hemophilia - World Federation International group dedicated to promoting the high standards of medical care for hemophiliacs. World Federation of hemophilia. 1425 René Lévesque Blvd. W. Suite 1010 http://www.wfh.org/

English Français Español Home ... WFH Library / Publications World Federation of Hemophilia 1425 René Lévesque Blvd. W. Suite 1010 Montréal, Québec H3G 1T7 Canada Tel.: +1 (514) 875-7944 Fax: +1 (514) 875-8916 E-mail: wfh@wfh.org Employment Opportunities Communications Officer The World Federation of Hemophilia is a growing international not-for-profit organization working to improve care for people with hemophilia and related bleeding disorders. We are looking for a Communications Officer to plan and execute an integrated communications strategy to promote the WFH and its activities, which includes producing a broad range of print and electronic communications. (read more ) Haemophilia World The March edition of the newsletter is dedicated to the 40th anniversary of the World Federation of Hemophilia. You’ll read about our transformation from a small, volunteer-run organization, into a highly regarded professional organization that makes proven and sustainable improvements in global hemophilia care. (read more ) WFH Executive Director Appointment As was previously announced, Line Robillard, WFH Executive Director for the past nine years, will be leaving at the end of April. Line Robillard has played an instrumental role in bringing the WFH to where it is today, and it was not an easy task to find someone who could fill her shoes.

4. Welcome To Hemophilia Galaxy Support information specifically designed for people with hemophilia, their families, and health care professionals. http://www.hemophiliagalaxy.com

Required for response. About Hemophilia Galaxy Factor Assist Contact Us Receive Updates ... Hemophilia Encyclopedia This site is intended for use only by residents of the United States and Canada. Last updated 3/26

5. Hemophilia Resource Network Clinical care pathways and administrative services to hematologists managing hospitalized persons with hemophilia. http://www.hemophilia.net/

The Hemophilia Resource Network (HRN) is a consultation service working with hematologists, hospitals, and insurers. To facilitate optimum inpatient management for persons with bleeding disorders, HRN provides: Clinical Care Pathways Educational Resources for Healthcare Professionals Outcome Analyses This site includes case presentations, journal summaries, and links to other sites focusing on hemophilia. While this site is primarily directed toward healthcare professionals, please visit the Hemophilia Awareness page for information of more general interest. Home Products and Services Contact Information For Hematologists ... Hemophilia Awareness Please bear with us as this site is still under construction. Questions or problems regarding this web site should be directed to webmaster@hemophilia.net Last Modified January 17, 1998.

6. Hemophilia: "The Royal Disease" - Case Study Collection - National Center For Ca hemophilia The Royal Disease, by Yelena AronovaTiuntseva and Clyde Freeman Herreid, University at Buffalo. From the Case Study Collection of the National Center for Case Study Teaching in Science. http://ublib.buffalo.edu/libraries/projects/cases/hemo.htm

Hemophilia: "The Royal Disease" by Yelena Aronova-Tiuntseva and Clyde Freeman Herreid University at Buffalo, State University of New York Hemophilia is an X-linked recessive disorder characterized by the inability to properly form blood clots. Until recently, hemophilia was untreatable, and only a few hemophiliacs survived to reproductive age because any small cut or internal hemorrhaging after even a minor bruise were fatal. Now hemophilia is treated with blood transfusions and infusions of a blood derived substance known as anti-hemophilic factor. However, such treatment is very expensive and involves the risk of contracting AIDS. Hemophilia affects males much more frequently (1 in 10,000) than females (1 in 100,000,000). This occurs because a critical blood clotting gene is carried on the X chromosome. Since males only carry one X chromosome, if that is defective, hemoph ilia will immediately show up. An early death is likely. Females, on the other hand, carry two X chromosomes. If only one is defective, the other normal X chromosome can compensate. The woman will have normal blood clotting; she will simply be a carri er of the recessive defective gene. This fact will be discovered if some of her children are hemophiliacs. Naturally, women hemophiliacs are rare because it takes two defective X chromosomes in order for the condition to be seen. Hemophilia has played an important role in Europe's history, for it suddenly cropped up in the children of Great Britain's Queen Victoria. It became known as the "Royal disease" because it spread to the royal families of Europe through Victoria's descendants. Queen Victoria had always been worried about the quality of the blood of the British royal family. Her feelings about the necessity of revitalizing what she called the "lymphatic" blood of their houses are reflected in her letter to her daughter Vicky: "I do wish one could find some more black eyed Princes and Princesses for our children! I can't help thinking what dear Papa said that it was in fact when there was some little imperfection in the pure Royal descent that some fresh blood was infused... For that constant fair hair and blue eyes makes the blood so lymphatic... it is not as trivial as you may think, for darling Papa often with vehemence said: "We must have some strong blood."

7. Hemophilia Federation Of America - Index Please Enter Here © 2001 hemophilia Federation of America All Rights Reserved http://www.hemophiliafed.org/

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8. Iranian Hemophilia Society Resources and news. http://www.hemophilia.org.ir/

Skip intro ... Iranian Hemophilia Society Skip intro ... Iranian Hemophilia Society

9. Royal Hemophilia Pedigree hemophilia of the Sunshine State is a hemophilia Service Organization designed to accept the challenge of today's http://www.people.virginia.edu/~rjh9u/roylhema.html

A Pedigree of Hemophilia in the Royal Families of Europe Selected members of the pedigree I-1 = King George III III-1 and III-2 = Prince Albert and Queen Victoria IV-5 and IV-6 = Alice of Hesse and Ludwig IV of Hesse V-13 and V-14 = Alix and Nicholas II (Tsar of Russia) VI-16 = Alexei VIII-1 = Prince Charles A Case Study of Hemophilia An Alternate Diagnosis World Federation of Hemophilia National Hemophilia Foundation ... The British Monarchy This document maintained by Robert J. Huskey Last updated on August 11, 1998.

10. Hemophilia Foundation Of Michigan Information about the organization, the services offered, education, research, camp programs and events. http://www.hfmich.org/

Get Involved Events Medical Services Client Services ... Home HIGHLIGHTS Must See In Memory of Andy L. Voegtle 1961-2003 Ivan C. Harner Watch the Comcast Newsmakers video Must See Learn about Camp Bold Eagle. Watch our video NEW 2003 Academic Scholarships Eligible? Get Info! NEW 2003 Winter Edition View the TEEN Newsletter NEW January/February 2003 INFO UPDATE Request a Summary by Email of your donations to HFM. NEW Volunteer On-line. Get the application Volunteer for HFM Board. Get the Nomination Packet NEW Interviews at Camp Bold Eagle. Watch the Interviews 1st HFM Teen Newsletter! Announcing the first ever HFM Teen Newsletter. It is written by teens serving on the MYLIFE committee who are helping to improve educational programs such as Teen Retreat and other HFM events. Hey all you TEENS out there! CHECK-OUT HFM TEEN NEWSLETTER ! This publication will be produced twice a year to help inform teens on issues relating to the experience of a teen with a bleeding disorder. In future issues look for comments from teens in other countries around the world. If you are a TEEN and want to comment on this publication, get on the mailing list or submit a column for future publication please contact

11. The Body: Hemophilia And HIV/AIDS A collection of resources related to hemophiliacs and HIV, including topics such as the safety of the blood supply and tained blood products, from The Body. http://www.thebody.com/whatis/hemophilia.html

Hemophilia and HIV/AIDS World-Wide Legal, Financial, and Public Health Consequences of HIV Contamination of Blood and Blood Products in the 1980s and 1990s (March 5, 2002) From Annals of Internal Medicine The Forgotten Ones: Chatting with Jack Silliman, a Hemophiliac with HIV/AIDS (May 2001) From AIDS Project Los Angeles Ricky Ray Fund Begins Payments to AIDS Patients and Families (October 2000) From Body Positive HHS Begins Notifying Ricky Ray Hemophilia Relief Fund Recipients of Payments (August 28, 2000) From the U.S. Department of Health and Human Services Hemophilia Relief Fund (December, 1998) From Body Positive Blood Brothers (Fall, 1998) From the Seattle Treatment Education Project (STEP) Weird Science: Women, Hemophiliacs and the FDA (Fall/Winter, 1997) From Women Alive We Are Family (September, 1997) A discussion about living with hemophilia and AIDS From Body Positive The Challenges of Being a Woman with a "Male Disease" (September, 1997) Women with bleeding disorders From Body Positive Cry Bloody Murder (August, 1997) A review of the book by Elaine DePrince, about the deaths of her hemophiliac sons through HIV contracted during transfusions

12. Hemophilia Of South Carolina Information on this blood condition, treatment options, fund raisers, and events planned to increase public awareness. http://www.hemophilia-sc.org/

Hemophilia of South Carolina http://www.hemophilia-sc.org/ Telephone 1-888-829-4849 (general) 1-877-9-HSC-WEB (Internet-related matters only) Accesses: [Error Opening Counter File Click for more info]

13. Welcome To Hemophilia Ontario Committed to improve the quality of life of people affected by hemophilia and related blood conditions, Category Health Conditions and Diseases Blood Disorders hemophilia...... Behring Canada. hemophilia Ontario welcomes your comments on oursite. Original site design by Scott Carleton Creative Services. http://www.hemophilia.on.ca/

news: Mar 25/03: upcoming AGM Meetings: April 12... Feb 4/03: Groups gain improved access to drugs ... [CTAC site] This website is generously supported in part by Worldwide Online and through an unrestricted education grant from Aventis Behring Canada . Hemophilia Ontario welcomes your comments on our site. Original site design by Scott Carleton Creative Services

14. Hemophilia Of The Sunshine State hemophilia Association in America.Category Health Conditions and Diseases hemophilia Organizations......Adult Child. hemophilia of the Sunshine State is a hemophilia Service Organizationdesigned to accept the challenge of today's hemophilia community. http://www.hemophilia.com/

Are You Newly Diagnosed? Adult Child Hemophilia of the Sunshine State is a Hemophilia Service Organization designed to accept the challenge of today's hemophilia community. Our mission is to understand and meet the needs of persons affected by hemophilia, their families, clinicians, and comprehensive treatment centers. Our goal is to offer the hemophilia community the most cost effective and comprehensive range of products and services possible. JCAHO Accredited Extranet

15. Hemophilia Foundation Of Illinois Home Page Supports those affected by hemophilia, related bleeding disorders, and complications of these disorders or their treatment. Activities and events, programs and services offered are featured. Offices in Chicago. http://www.hemophiliaillinois.org/

A not-for-profit 501(c)(3) organization 332 S. Michigan Avenue Suite 1135 Chicago, IL 60604-4305 Telephone: 312.427.1495 Fax: 312.427.1602 E-mail: info@hemophiliaillinois.org HFI's mission is to improve the quality of life for persons affected by hemophilia, related bleeding disorders, and complications of these disorders or their treatment. The Hemophilia Foundation of Illinois provides and promotes Advocacy, Consumer Services, Education and Research. Camp was Fun! The 30th session of Camp Warren Jyrch was held Sunday, August 4 - Saturday, August 10. See how much fun we had ... For information on hemophilia services in Illinois, please see the contact information above. This Website is Being Redesigned The HFI website is being redesigned by the students of College of Dupage, Glen Ellyn, IL. If you have suggestions for improvements, email us at webmaster@HemophiliaIllinois.org

16. Hemophilia Disease management, progress and possible cures.Category Health Conditions and Diseases Blood Disorders hemophilia......hemophilia hemophilia is the oldest known hereditary bleeding disorder.There are two types of hemophilia, A and B (Christmas Disease). http://www.medceu.com/tests/hemophilia.htm

HEMOPHILIA Objectives By the end of the course the student will be familiar with: A. Medical advancements and prospect for the future B. Management of Hemophilia and treatments for the disease C. Safety products for Hemophiliacs Hemophilia is the oldest known hereditary bleeding disorder. There are two types of hemophilia, A and B (Christmas Disease). Low levels or complete absence of a blood protein essential for clotting causes both. Patients with hemophilia A lack the blood clotting protein, factor VIII, and those with hemophilia B lack factor IX. There are about 20,000 hemophilia patients in the United States. Each year, about 400 babies are born with this disorder. Approximately 85% have hemophilia A and the remainder has hemophilia B. The severity of hemophilia is related to the amount of the clotting factor in the blood. About 70% of hemophilia patients have less than one percent of the normal amount and, thus, have severe hemophilia. A small increase in the blood level of the clotting factor, up to five percent of normal, results in mild hemophilia with rare bleeding except after injuries or surgery. Enormous strides made in assuring the safety of the blood supply and in the genetic aspects of hemophilia research allow us now to focus on issues, which will improve the quality of life of the hemophilia patient and, ultimately, develop a cure.

17. FAMOHIO Hemophilia Home Page Promotes the sharing of knowledge, experiences and concerns among those individuals with hemophilia and related bleeding disorders. http://www.famohio.org/

Welcome To FAMOHIO ! FAMOHIO promotes the sharing of knowledge, experiences and concerns among those individuals with hemophilia and related bleeding disorders. FAMOHIO is a registered 501(c)(3) charity. Click on the FAMOHIO logo to enter the main site or select one of the shortcuts below. Visitors To FAMOHIO Portions of the FAMOHIO web site were last updated on March 10, 2003 FAMOHIO, Inc

18. National Hemophilia Foundation National hemophilia Foundation 116 West 32nd Street, 11th Floor New York, NY 10001(800) 42HANDI - (212) 328-3700 - fax (212) 328-3777 Email info@hemophilia http://www.hemophilia.org/home.htm

Click here to read the latest news! (Sign up to to receive the latest news via e-mail!) VWD Makes the Evening News! CBS-2 New York recently aired a special health report featuring two women with von Willebrand Disease. The station is continuing to show the report over the CBS-2 New York Web site ( click here ), along with additional information about VWD and a link to NHF's own Project Red Flag site . Project Red Flag, Real Talk about Women's Bleeding Disorders, is made possible with support from Aventis Behring and the Centers for Disease Control and Prevention (CDC). Help Us Find a Cure Click here to learn more about NHF's efforts to find a cure for bleeding disorders. Click here to view the video for our It's Time for a Cur e campaign. Are You a Winner? Click here to see the winners of our Superhero Contest. The contest is just one of the fun things that NHF's youth Web site, NHFyouthworld.org

19. Hemophilia Offers information about Von Willebrand disease. Includes the types, the symptoms, treatment, and heredity. http://www.hemophilia.ca/en/2.2.html

Von Willebrand Disease Von Willebrand Disease Introduction Types of Von Willebrand Disease Heredity Symptoms ... Make a Donation

20. Home A nonprofit consumer advocacy and service organization founded in 1990 to help meet the vast education Category Health Conditions and Diseases hemophilia Organizations......The hemophilia Foundation of Nevada is a nonprofit consumer advocacy and serviceorganization founded in 1990 to help meet the vast education and support needs http://www.hemophilianevada.org/

Who we are: The Hemophilia Foundation of Nevada is a nonprofit consumer advocacy and service organization founded in 1990 to help meet the vast education and support needs of the bleeding disorders community in Nevada. Our Mission Statement: "To improve the quality of care and life for persons with inherited bleeding disorders, including hemophilia and von Willebrand's Disease , through education, peer support, and advocacyl". Our services are state-wide and include: Education Disseminate information on inherited bleeding disorders and their complications, including hepatitis and HIV/AIDS, to consumers, health care providers and the public. Sponsor seminars on inherited bleeding disorders and their complications. Publish a newsletter, "Hemophilia Foundation News and Views". Maintain a large Library of brochures, books, articles, videos and audio tapes Peer Support Host picnics and social events. Telephone Support Network Resources/Referral Maintain listings for specialized hemophilia care and emergency clotting factor acquisition Sponsor youth to Hemophilia Camps.

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