The organizations and associations listed below provide important services and resources to the bleeding disorder community. If you have any questions, please contact us.
Hemophilia – North America
NHF
Bloodline
Centers for Disease Control and Prevention (CDC), Hematologic Diseases Branch
The Coalition for Hemophilia B
Hemophilia Federation of America
Hemophilia Foundation of Southern California
Hemophilia Foundation of Northern California
Central California Hemophilia Foundation
Hemophilia Association of San Diego County
New England Hemophilia Association
Hemophilia Foundation of Illinois
Hemophilia Alliance of Maine
Hemophilia Region VI
Hemophilia Region IX
Inalex Communications
LA Kelley Communications
National Heart, Lung, and Blood Institute (NHLBI)
Thompson’s Center Watch
World Federation of Hemophilia
Canadian Hemophilia Society
Student Resources
Scholarships for Students with Bleeding Disorders
Women with Bleeding Disorders
All about Bleeding (CSL Behring-sponsored site for patients with VWD)
Victory for Women – lifting the voices of women in the bleeding disorders community
Women can have hemophilia, too!
Platelet Disorders
Glanzmann Thrombasthenia
Hermansky-Pudlak Syndrome Network Inc.
Platelet Disorder Support Association
A Touch of Scarlett Blog
International Organizations
Canadian Hemophilia Society
Haemophilia Foundation of Australia
Haemophilia Foundation of New Zealand
Haemophilia Society (UK)
World Federation of Hemophilia
Blood Safety
American Association of Blood Banks
America’s Blood Centers
FDA Center for Biologics Evaluation and Research
International Blood Plasma News
Plasma Protein Therapeutics Association
vCJD (Variant Creutzfeldt-Jakob Disease)
Gene Therapy
American Society of Gene Therapy
Biotechnology Industry Organization (BIO)
Human Genome Project Information
National Human Genome Research Institute
National Library of Medicine of NIH
NIH Office of Biotechnology Activities
GeMCRIS
Benefits
Benefits Checkup – A Service of the National Council on Aging
Department of Health and Human Services – various health care search tools
Employee Benefits Security Administration – official information and rules from the U.S. Department of Labor
Government Benefits Finder Ph: 800-FED-INFO
Self Help Clearing House: search tool for people sharing information on hundreds of diseases, health conditions and other health care related situations
Social Security Administration – SSI, SSD, Food Stamps, Retirement Benefits, etc. Ph: 800-772-1213
Trade Dislocated Workers – TAA recipients Ph: 866-628-HCTC
U.S. Uninsured Helpline: 800-237-1317
Medicaid/Medicare
Centers for Medicare & Medicaid Services Ph: 800-633-4227
Medicare Rights Center Ph: 800-333-4114
Official U.S. Government Site for People with Medicare, age 65 or older or disabled Ph: 800-633-4227 or 800-952-5253
COBRA – HIPAA
COBRA Health Plan Advice for Individuals and Small Businesses
U.S. Department of Labor Ph: 866-487-2365
High Risk Insurance Pools
National Association of State Comprehensive Insurance Plans
Free/Low Cost Healthcare
Hill Burton Free Care Program Ph: 800-638-0742
Federal Emergency Services – for those unable to verify U.S. Citizenship and Immigration status Ph. 800-352-8401
Foundation for Health Coverage Education Ph: 800-234-1317
National Foundation of Dentistry for the Handicapped Ph: 303-534-5360
Veterans Medical Benefits Package Ph: 877-222-8387
Prescription Assistance Programs
Needy Meds – Find help with the cost of medicine
Partnership for Prescription Assistance Ph: 888-477-2669
Pharmaceutical Research and Manufacturers of America Ph: 202-835-3400
PSI Patient Services Incorporated Ph: 800-366-7741
Rx Assist – Patient Assistance Program Center
Children’s Insurance (CHIP, Title V)
Children’s Defense Fund Ph: 800-233-1200
Family Voices – keeping families at the center of children’s health care Ph: 505-872-4774
Institute for Child Health Policy Ph 352-265-7220
Robert Wood Johnson Foundation Ph 877-543-7669
U.S. Dept. of Health & Human Services Ph 877-543-7669
AIDS/HIV Assistance Programs (ADAP)
Aids Treatment Data Network – Access Project Ph: 800-734-7104
Health Insurance Basics
Covering the Uninsured – a project of the Robert Wood Johnson Foundation Ph: 877-665-2889
Georgetown University Health Policy Institute
Insure U – Get Smart about Insurance Ph: 816-842-3600
Advocacy Groups
Families USA – The Voice for Health Care Consumers Ph 202-628-3030
Patient Advocate Foundation Solving Insurance and Healthcare Access Problems Ph: 800-532-5274
Health Policy
Health Coverage Tax Credit (HCTC) Ph. 866-628-HCTC
Kaiser Family Foundation Ph: 650-854-9400
References
Foundation for Health Coverage Education
HANDI, NHF’s Resource Center, A service of the National Hemophilia Foundation 800-42-HANDI