At Hope for Hemophilia we are striving to connect the dots with the resources that make the hemophilia better everyday! We do not have an exhausted list of resources but this is our attempt at helping you sort through the vast amounts of information available and understand the roles that each plays in helping you as a patient.
National Hemophilia FoundationThe National Hemophilia Foundation is dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy & research.
They are a great resource for educating yourself on hemophilia basics, clinical studies, and patient political advocacy. |
Hemophilia Federation of AmericaHemophilia Federation of America was established to strengthen the bleeding disorder community support and awareness, develop effective local organizations, and implement valuable community-based programs.
They specialize in political advocacy and patient support through education, financial aid through Helping Hands, and public awareness. |
World Federation of HemophiliaThe World Hemophilia Federation does a great job of educating governments and medical professionals internationally of hemophilia. They advocate for adequate supply of safe product to help patient’s worldwide. They help distribute donated factor to third world and underdeveloped countries to help save lives of patients.
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LOCAL CHAPTERSNHF supports local hemophilia chapters who provide programs and services to help educate patients and their families, provide activities to cultivate localized community, and advocate for local support in the bleeding disorder community.
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hemophilia Treatment centersLocalized clinics that specialize in treating hemophilia. They are usually located in a hospital and partner with physical therapists, social workers, dentists, along with hematologists and other professional clinicians to provide comprehensive medical care for people living with hemophilia.
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PATIENT SERVICES INC.
Patient Services Inc. is an organization that provides assistance with the cost of premiums and co-pays for people suffering with chronic illness.
Comprehensive Health Education servicesCamp address the unique needs of children with active inhibitors and their families. Full weekend of education, support and fun. Held twice a year; camper costs covered.
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Nonprofit founded by two men with hemophilia offers support to people with bleeding disorders through physical fitness, fitness education, advocacy, financial assistance for physical rehabilitation & exercise equipment.
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BLOGS
There are many blogs out there that are specific to hemophilia. There are blogs from mom’s telling their adventures in raising someone with hemophilia and others who are telling of their personal journey. We have highlighted a few that you may or may not know
Interested in writing blogs for our organization? Contact info@hopeforhemophilia & let us know!
We are working on providing the best list of resources available to the hemophilia community. If you know of a resource that you think should be listed here, please email us the information to [email protected].
Please check back here often as we are working to improve this list and add to it regularly.
Please check back here often as we are working to improve this list and add to it regularly.
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