Accepting the news that your precious child has hemophilia is overwhelming all in itself, now trying to do research on the subject matter while being consumed with emotion can sometimes feel unbearable. With the amount of information available at our fingertips it can become time consuming. This is precious time that you need to be free and available to spend with your child. How can you get it all done and still be able to be a wife, a mother, a woman; not to worry! Here at Gissybella we have taken the initiative to do some of the research for you. We have taken the time to put together a small list of resources that are available for you to help you adapt and be equipped for this new chapter of life.
The National Hemophilia Foundation (NHF) is dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research. Established in 1948, the National Hemophilia Foundation has chapters throughout the country. Its programs and initiatives are made possible through the generosity of individuals, corporations and foundations as well as through a cooperative agreement with the Centers for Disease Control and Prevention (CDC).
We save and improve lives by:
training experts in the field to properly diagnose and manage patients;
advocating for adequate supply of safe treatment products; and
educating and empowering people with bleeding disorders to help them live healthier, longer and more productive lives.
Our vision of “Treatment For All” is that one day, all people with a bleeding disorder will have proper care, no matter where they live. Treatment for All means:
proper diagnosis, management, and care by a multidisciplinary team of trained specialists;
safe, effective treatment products for all people with bleeding disorders; and
expanding services beyond hemophilia, to those with von Willebrand disease, rare factor deficiencies, and inherited platelet disorders.
Hemophilia Federation of America
HFA member organizations across the country utilize HFA’s collaborative federation to strengthen community support and awareness, develop effective local organizations, and implement valuable community-based programs. These programs include a wide range of adult outreach initiatives, as well as broad-based support for families with bleeding disorders / hemophilia.
Health Resources and Services Administration Maternal and Child Health
The National Hemophilia Program assists people with hemophilia and other bleeding disorders and their families by helping to provide recommended and appropriate coordinated care through 12 regional grants with a connected regional network of 130 hemophilia treatment centers (HTCs) located throughout the country. These HTCs help improve the health of these patients by providing diagnostic and educational services for these inherited conditions; developing wide-ranging, culturally sensitive and family-centered genetic services and an understanding of how these genetic conditions affect people’s health.
Connected by shared experience. Comforted by shared understanding.
Hemophilia Moms is a community of mothers whose children have hemophilia. They work to build awareness about bleeding disorders, maintain an active support network, and help caregivers and people with hemophilia stay in touch with others who share their experience
As you can see, you are not alone! There is a community of moms like you working hard to keep their kids safe, healthy and comfortable. You don’t have to do this alone. Until next time…
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