Advocacy Priorities
Here are some links to information about important ways to improve the lives of people with bleeding disorders.
Federal Issues
- Funding, with accountability, for facilitation of communication among people affected by rare bleeding disorders, and outreach to increase early diagnosis and proper treatment
- Lifetime Insurance Caps
- Access to Medigap Insurance
- Funding for Hemophilia Treatment Centers (HTCs)
- Funding for research for a cure
State Issues
- Enforced protocols for safe emergency care (ambulances, emergency departments)
- Designation of a Bleeding Disorders Awareness Day
- Medicaid coverage
- Required bleeding disorders screening prior to performing surgery on women for heavy periods
Research
- Ask your HTC to participate in the quality of life data collection project, which will provide important baseline data for research for a cure.
- Information about participating in medical research from the National Institutes of Health. and finding a research study near you.
- Information about bleeding disorders research from the National Institutes of Health.
Toolkit for Advocates
Bleeding Disorders Organizations
Hemophilia Federation of America
World Federation of Hemophilia
Links to International Bleeding Disorders Organizations
Free Health & Legal Information
Bleeding Disorders Resources from Coping.org
Bleeding Disorders Legal Hotline — Call Toll Free 1-800-520-6154
Free Information and Aids to Quit Tobacco–for all New York State Residents
New York State Department of Health (general health information)
Financial
Family Health Plus—Family Health Plus is a public health insurance program for adults who are aged 19 to 64 who have income or resources too high to qualify for Medicaid.
Child Health Plus–New York State has a health insurance plan for kids, called Child Health Plus. Depending on your family’s income, your child may be eligible to join either Children’s Medicaid or Child Health Plus . Both Children’s Medicaid and Child Health Plus are available through dozens of providers throughout the state. ****Be sure to ask about coverage for bleeding disorders care and clotting medications before enrolling.****
Financial Assistance from Clotting Factor Manufacturers and Homecare Companies
Health Insurance Programs for New Yorkers
Healthy NY—Coverage for Eligible Small Businesses, Sole Proprietors and Individuals
Federal Health Information Privacy and Portability for Consumers
State Laws and Regulations About Health Insurance
HSA Insider—Information about Health Savings Accounts
U.S. Treasury Department—Information about Health Savings Accounts
Comprehensive Information for New York Consumers Seeking Health Insurance
Camps for Youth with Bleeding Disorders
http://www.nhfyouthworld.org/camps.htm
Information
Information about bleeding disorders
Women with bleeding disorders–Project Red Flag
Basic Concepts of Hemophilia: A Self Study and Planning Guide for Families
Basic information about bleeding disorders from womenshealth.gov
Bleeding Disorders & Being Prepared for Emergencies in Central New York
Brochure: Coping with Chronic Illness
Newsletters & Magazines
The Parent Empowerment Newsletter
National Prevention Program
Treatment Centers
TIP: Use this search if you are traveling. Keep the list with you at all times so you can access local treatment centers in case of emergency.
Search for Treatment Centers in the United States
Search for Treatment Centers Outside the US
Scholarships
Link to scholarships for persons with bleeding disorders and their families
Support
Project Red Flag online discussion group (for women with bleeding disorders)
Discussion groups for newly diagnosed children and inhibitors
Yahoo Bleeding Disorders group (for parents of children with bleeding disorders)
Yahoo Hemophilia group (for persons with Hemophilia)
Yahoo von Willebrand group (for persons with von Willebrand disease)
