Patient Resources Online Hemophilia Resources
Click any of the following links to access hemophilia-related information, support, and resources. If you have hemophilia or know someone who is dealing with hemophilia, the following online hemophilia resources may provide the hemophilia support and education you seek.
These online hemophilia resources are provided for your convenience. However, they lead to external hemophilia websites not created, managed, or maintained by Baxter. Baxter is not responsible for, and does not necessarily endorse, the opinions or therapeutics represented on these external pages.
Online Hemophilia Resource: Categories
- Hemophilia Organizations
- Hemophilia Information Sites and Resources
- Health and the Body
- Children and Teens
- Women's Health
- Parenting & Education
- Employment
- Nutrition
- Dental Health
Hemophilia Organizations
National Hemophilia Foundation (NHF)
The NHF’s official hemophilia website features extensive hemophilia-related information, support, and resources. The NHF is perhaps the most comprehensive information source for people and families dealing with hemophilia.
World Federation of Hemophilia (WFH)
The WFH is an international organization dedicated to introducing, improving, and maintaining care for people with hemophilia and related bleeding disorders around the world.
Hemophilia Federation of America (HFA)
The HFA is a national, nonprofit advocacy organization established for people with hemophilia and bleeding disorders and their families. Among other activities, HFA sponsors educational and fundraising programs, monitors actions of the government and industry, and promotes awareness of the bleeding disorders community. This site also offers links for parents to subscribe to various mailing lists and support/discussion groups covering hemophilia and parenting.
Canadian Hemophilia Society (CHS)
The CHS’s official hemophilia website features news and education about hemophilia and other bleeding disorders, in both French and English. It offers a special section specifically for children and teens, including games and a youth forum. The site is aimed at Canadians in particular, although people around the world should find topics of interest about hemophilia.
The Coalition for Hemophilia B
http://www.coalitionforhemophiliab.org
Parents of a child with moderate/severe hemophilia B founded this organization, which focuses on research, advocacy, and therapy development. The site provides contact information and past newsletters.
South African Haemophilia Foundation
The South African Haemophilia Foundation is committed to promote the welfare of all people with hemophilia and similar conditions in South Africa and elsewhere.
Information And Resources
Centers for Disease Control and Prevention (CDC)
The CDC, an agency of the U.S. Department of Health and Human Services (HHS), focuses on preventing and controlling disease, injury, and disability. Use the “A-Z Index” navigation at the top of the CDC website for more information about hemophilia and other bleeding disorders.
MedicAlert®
Information on the MedicAlert® bracelet and program for people with hemophilia.
National Institutes of Health (NIH)
The NIH, part of the U.S. Department of Health and Human Services (HHS), is recognized worldwide as a leading medical research organization. Use the site’s search feature to locate articles about hemophilia.
National Organization for Rare Disorders (NORD)
NORD is a national, nonprofit health agency dedicated to the identification, treatment, and cure of rare disorders through education, advocacy, research, and service. For information specifically about hemophilia, click on the "Index of Rare Diseases."
Patient Services Incorporated (PSI)
PSI is a nonprofit charitable organization dedicated to helping people with hemophilia or other specific chronic medical illnesses seeking health insurance and providing premium/co-payment assistance through a financial eligibility process. PSI was established in 1989 and now serves 50 states. Private and corporate donations and grants are used to fund PSI’s services.
LA Kelley Communications
This site, developed by the mother of a child with hemophilia, helps meet the educational and advocacy needs of families dealing with hemophilia. The site offers a variety of free, original medical, scientific, consumer, child-development, and gene therapy books and newsletters.
Inalex Communications Programs for All Family Members
Effective, straightforward, and inspiring workshops, retreats, teleconferences and DVD series for all family members within the bleeding disorder community. Led by nationally renowned experts who discuss practical advice for families dealing with hemophilia, relationships and lives. Programs and DVD series presented in English and Spanish.
Hemophilia and von Willebrand's links
http://www.mindspring.com/~mattrk/VWD.htm
These sites have information on von Willebrand's disease that provides links to other hemophilia and von Willebrand sites.
U.S. Department of Justice
http://www.usdoj.gov/crt/ada/cguide.htm
Links to a guide to disability rights laws and how it relates to people with hemophilia.
Health And Body
The Body
Site that endeavors to lower barriers between patients and clinicians, demystify HIV/AIDS and its treatment; improve patients' quality of life; and foster community through human connection. Searchable site has "what's new" information, insight from experts, chat, bulletin boards, government resources.
American Society of Pediatric Hematology/Oncology (ASPHO)
Society's website serves both medical professionals and patients. Dedicated to advancing knowledge in pediatric blood diseases and cancer. Annual scientific meeting, journal, online resources, and links.
WebMD
WebMD provides valuable health information, tools for managing your health, and support to those who seek information.
The Human Genome Project
Genome programs of the U.S. Department of Energy Office of Science, founder of the Human Genome Project and leader in systems biology research.
National Society of Genetic Counselors
The Society promotes the professional interests of genetic counselors and provides a network for professional communications. Local and national continuing education opportunities and the discussion of all issues relevant to human genetics and the genetic counseling profession are an integral part of belonging to the NSGC.
Oxford Haemophilia Centre, Oxford Radcliffe Hospital, UK
http://www.oxfordradcliffe.nhs.uk/forpatients/departments/specialistmed/haemophilia/haemophilia.aspx
The official website of the first clinical facility devoted to the care of people with hemophilia and other bleeding disorders in the United Kingdom. For historical information, click on "the history of haemophilia" on the home page.
Centers for Disease Control, Public Health Genomics
This site provides information about human genomic discoveries and how they can be used to improve health and prevent disease. It also provides links to CDC-wide activities in public health genomics across the lifespan.
Children And Teens
Maternal and Child Health Bureau (MCHB)
The MCHB is a bureau of the Health Resources and Services Administration (HRSA), which is part of the U.S. Department of Health and Human Services (HHS). The site contains extensive educational resources on parenting, children with special healthcare needs, women’s health, and more.
TeensHealth
This website includes information on friends, food and fitness, teen sports, and other topics. It was developed by medical experts at the Nemours Foundation, a non-profit organization devoted to children's health.
U.S. Food and Drug Administration:
FDA Kids Home Page
http://www.fda.gov/oc/opacom/kids/
Easy-to-access articles and FDA studies on health topics.
American Medical Association:
Adolescent Health On-Line
http://www.ama-assn.org/ama/pub/category/1947.html
The AMA's Program on Child and Adolescent Health provides this resource for adolescent health issues.
Society for Adolescent Medicine
http://www.adolescenthealth.org
A multidisciplinary organization of professionals committed to improving the physical and psychosocial health and well being of all adolescents.
Women’s Health
Office on Women’s Health
Links to fact sheets, resource papers, meeting summaries, and articles for the scientific and popular press on a variety of issues concerning women's health from the Office on Women’s Health in the Department of Health and Human Services.
Parenting And Education
U.S. Department of Education
http://www.ed.gov/parents/needs/speced/iepguide
Link to A Guide to the Individualized Education Program.
National PTA
The website of the National PTA, volunteer child advocacy association.
Employment
Centers for Medicare and Medicaid Services (CMS) — Ticket to Work and Work Incentives Improvement Act of 1999
This website provides information on the 1999 landmark legislation that modernizes the employment services system for people with disabilities. Millions of people with disabilities no longer have to choose between taking a job and having health care. Disabled people with hemophilia will be able to continue receiving disability benefits when starting jobs and Medicaid coverage for factor concentrates even after they return to work. Find out more by visiting this website and the U.S. Social Security Administration website listed below.
U.S. Department of Labor, Bureau of Labor Statistics (BLS)
This site offers a variety of educational resources about careers. For instance, the Occupational Outlook Handbook provides in-depth analyses of hundreds of occupations, including the nature of the work, working conditions, required qualifications, job outlook, and more. Access the handbook by clicking on the link under Publications on the BLS website. This site also features a section on career information for kids. This section, appropriate even for younger readers, describes career options for kids who like math, art, science, reading, music, social studies, and more.
Healthy and Ready to Work
This website provides information on the "Healthy and Ready to Work" (HRTW) initiative, which focuses on helping children with special health-care needs who may need assistance in making the transition from pediatric to adult health care and to post-secondary education and/or employment. Healthy & Ready to Work is an initiative of the Division of Services for Children with Special Health Needs, under the auspices of the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau.
U.S. Department of Education, Office of Vocational and Adult Education (OVAE)
http://www.ed.gov/about/offices/list/ovae
This organization supports policies, programs, and activities that help young people and adults obtain the knowledge and skills they need to prepare for post-secondary education or successful careers. This website includes information, research, and resources to help students become lifelong learners and make the most of their education and careers.
U.S. Social Security Administration
This website provides a variety of vocational information and resources. Use the site’s search feature to find articles and programs about employment, vocational rehabilitation services, and the "Ticket to Work" program.
COBRA Health Plan Advice for Individuals and Small Businesses
Includes information on employee notification, administration, coverage, definitions, whether you qualify, rules, regulations, and benefits.
Federal Consumer Information Center (FCIC)
The FCIC provides a variety of resources for consumers. It also works with dozens of federal and state agencies to get their messages and information to the public. One of the links, www.kids.gov, accesses a kid-oriented page providing descriptions of numerous career-related websites.
Nutrition
American Council on Science and Health:
Nutrition/Lifestyle
http://www.acsh.org/healthissues
The American Council on Science and Health’s Nutrition/Lifestyle section, with news on public health issues.
American Dietetic Association
The website of the American Dietetic Association is full of good ideas for eating well.
National Institutes of Health:
Office of Dietary Supplements
http://www.dietary-supplements.info.nih.gov
The Office of Dietary Supplements offers updates and news on supplements.
U.S. Department of Agriculture:
Food and Nutrition Information Center
This site contains great tips on how to fit MyPlate into your daily eating plan. Also check out www.fns.usda.gov/tn/kids-pyramid.html for the new Food Guide Pyramid for Young Children.
U.S. Food and Drug Administration:
Center for Food Safety and Applied Nutrition
http://www.fda.gov/Food/FoodSafety/default.htm
The FDA’s Center for Food Safety and Applied Nutrition includes the latest news and information on nutrition.
Dental Health
American Dental Association
The official website of the American Dental Association, which includes frequently asked questions on oral health care and a search vehicle for finding a dentist in your neighborhood.
Find More Help And Resources Here
- Educate yourself about hemophilia here.
- Need to manage your health insurance?
- There for you with programs connecting the community.
- Check out more info on summer camps.
Note:These links are provided for your convenience. However, they lead to external websites not created, managed, or maintained by Baxter. Baxter is not responsible for, and does not necessarily endorse, the opinions or therapeutics represented on these external pages.
