Online Resources
Click any of the following links to access hemophilia-related information, support, and resources. We hope you will find the links useful.
These links are provided for your convenience. However, they lead to external Web sites 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.
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)
- www.hemophilia.org
- The NHF’s official Web site features extensive hemophilia-related information, support, and resources. The NHF is perhaps the most comprehensive information source for people and families living with hemophilia.
- World Federation of Hemophilia (WFH)
- www.wfh.org
- 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)
- www.hemophiliafed.org
- The HFA is a national, nonprofit advocacy organization established for people with 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.
- Canadian Hemophilia Society (CHS)
- www.hemophilia.ca
- The CHS’s official Web site 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.
- The Coalition for Hemophilia B
- 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
- www.haemophilia.org.za
- The South African Haemophilia Foundation is committed to promote the welfare of all persons with hemophilia and similar conditions in South Africa and elsewhere.
Hemophilia Information Sites and Resources
- Centers for Disease Control and Prevention (CDC)
- www.cdc.gov
- The CDC, an agency of the U.S. Department of Health and Human Services (HHS), focuses on preventing and controlling disease, injury, and disability. Click on "Health Topics A–Z" for information on hemophilia and other bleeding disorders.
- MedicAlert®
- www.medicalert.org
- Information on the MedicAlert® bracelet and program.
- National Institutes of Health (NIH)
- www.nih.gov
- 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)
- www.rarediseases.org
- 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)
- www.uneedpsi.org
- 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
- www.kelleycom.com
- This site, developed by the mother of a child with hemophilia, helps meet the educational and advocacy needs of families with hemophilia. The site offers a variety of free, original medical, scientific, consumer, child-development, and gene therapy books and newsletters.
- Hemophilia and von Willebrand links
- 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
- www.usdoj.gov/crt/ada/cguide.htm
- Links to a guide to disability rights laws
Health and the Body
- The Body
- www.thebody.com
- 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 (ASPH/O)
- www.aspho.org
- Society's Web site serving both medical professionals and patients. Dedicated to advancing knowledge in pediatric blood diseases and cancer. Annual scientific meeting, journal, online resources, and links.
- WebMD
- www.webmd.com
- WebMD provides valuable health information, tools for managing your health, and support to those who seek information.
- Oxford Haemophilia Centre, Oxford Radcliffe Hospital, UK
- www.oxfordradcliffe.nhs.uk/forpatients/departments/
specialistmed/haemophilia/haemophilia.aspx - The official Web site of the first clinical facility devoted to the care of people with bleeding disorders in the United Kingdom. For historical information, click on "the history of haemophilia" on the home page.
- National Society of Genetic Counselors
- www.nsgc.org
- 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.
- The Human Genome Project
- www.doegenomes.org
- Genome programs of the U.S. Department of Energy Office of Science, founder of the Human Genome Project and leader in systems biology research.
- Centers for Disease Control Office of Genetics and Disease Prevention
- www.cdc.gov/genomics/default.htm
- 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.
- Genetic Science Learning Center
- gslc.genetics.utah.edu
- Web site of the Genetic Science Learning Center at the Eccles Institute of Human Genetics, University of Utah, helping people understand how genetics affects their lives and society.
Children and Teens
- Maternal and Child Health Bureau (MCHB)
- www.mchb.hrsa.gov
- 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
- www.teenshealth.org
- This Web site 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
- www.fda.gov/oc/opacom/kids/
- Easy-to-access articles and FDA studies on health topics.
- Adolescence Directory On-Line
- www.education.Indiana.edu/cas/adol/adol.html
- The University of Indiana developed this site with links to online teen magazines, cool hangouts on the Web, and news on issues of interest to adolescents.
- American Medical Association: Adolescent Health On-Line
- 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
- 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
- www.4woman.gov/pub/
- 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.
- Shemophilia
- www.shemophilia.org
- Web site empowering women and anyone living with the challenges of a rare or inherited bleeding disorder.
Parenting and Education
- U.S. Department of Education
- www.ed.gov/parents/needs/speced/iepguide
- Link to A Guide to the Individualized Education Program.
- National PTA
- www.pta.org
- Children First: The Web site of the National PTA.
- Pregnancy & Parenting
- parenting.ivillage.com
- Parenting Web site from iVillage.
Employment
- Centers for Medicare and Medicaid Services (CMS) — Ticket to Work and Work Incentives Improvement Act of 1999
- www.cms.hhs.gov/twwiia
- This Web site 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 Web site and the U.S. Social Security Administration Web site listed below.
- U.S. Social Security Administration
- www.ssa.gov
- This Web site 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.
- Healthy and Ready to Work
- www.hrtw.org
- This Web site 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)
- 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 Web site includes information, research, and resources to help students become lifelong learners and make the most of their education and careers.
- U.S. Department of Labor, Bureau of Labor Statistics (BLS)
- www.bls.gov
- 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. The handbook also describes the job of vocational rehabilitation counselor. Access the handbook by clicking on the link under Publications and Research Papers. 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.
- Adolescent Employment Readiness Center (AERC)
- www.dcchildrens.com/dcchildrens/ProgramDisplay.aspx?ProgramId=311
- AERC is a national program for adolescents (ages 12 to 21) with chronic illnesses or physical disabilities. The program helps people in this age group obtain skills required for successful employment. Services include career counseling, interest and abilities testing, transition planning, educational assessment, and more. This Web site includes links to transition resources and a list of publications about employment and transition.
- COBRA Health Plan Advice for Individuals and Small Businesses
- www.cobrahealth.com
- Includes information on employee notification, administration, coverage, definitions, whether you qualify, rules, regulations, and benefits.
- Federal Consumer Information Center (FCIC)
- www.consumeraction.gov
- 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. The first link above takes you to a listing of state vocational and rehabilitation agencies that provide services including vocational rehabilitation counseling, evaluation, training, and job placement to disabled individuals. The second link accesses a kid-oriented page providing descriptions of numerous career-related Web sites.
Nutrition
- American Council on Science and Health: Nutrition/Lifestyle
- www.acsh.org/healthissues
- The American Council on Science and Health’s Nutrition/Lifestyle section, with news on public health issues.
- American Dietetic Association
- www.eatright.org
- The Web site of the American Dietetic Association is chock full of good ideas for eating well.
- National Institutes of Health: Office of Dietary Supplements
- 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
- www.nal.usda.gov/fnic/Fpyr/pyramid.html
- This site contains great tips on how to fit the Food Guide Pyramid into your daily eating plan. Also check out www.usda.gov/cnpp/KidsPyra for the new Food Guide Pyramid for Young Children.
- U.S. Food and Drug Administration: Center for Food Safety and Applied Nutrition
- www.cfsan.fda.gov
- The FDA’s Center for Food Safety and Applied Nutrition includes the latest news and information on nutrition.
Dental Health
- American Dental Association
- www.ada.org
- The official Web site 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.
- University of Manitoba, School of Dental Hygiene
- www.umanitoba.ca/outreach/wisdomtooth/
- Created by the School of Dental Hygiene, University of Manitoba, this site features a wide range of information on general dental care and oral health concerns.
