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Resources

 

Additional Resources

 

The National Hemophilia Foundation is dedicated to finding better treatments and cures for bleeding disorders and to preventing the complications of these disorders through education, advocacy and research. Click the following links to visit specific pages within NHF’s website:

The Hemophilia Federation of America is a national nonprofit organization that assists and advocates for the bleeding disorders community.  Their vision is that the bleeding disorders community will remove all barriers to both choice of treatment and quality of life.

Apply for the 2022 LSBDF/HFA Symposium Scholarship here.

 

World Federation of Hemophilia: An international not-for-profit organization dedicated to improving the lives of people with hemophilia and related bleeding disorders. They have developed a collection of Toolkits for many stages of life. Download informational pages and tools that you can share with teachers, ER staff, and more.

Committee of Ten Thousand: A grass-roots, peer-led, education, advocacy and support organization for persons with HIV disease.  The majority of their constituency is persons with hemophilia who contracted HIV/AIDS from tainted blood products.

Patient Notification System: A free, confidential, 24-hour communication system providing information on plasma-derived and recombinant analog therapy withdrawals and recalls.

Medic Alert Foundation: The original medical ID company that provies 24/7 emergency services.

 

American Medical ID: Medical ID company partnering with LSBDF to give patients 10% off their purchase and gives 10% back to the Chapter. Get code here.

LA Kelley Communications (PEN Newsletter): Founded in 1990 with the belief that any individual facing hardship, adversity or challenges-when given the right tools-can overcome, triumph, and even grow stronger in character and confidence.

Patient Services, Inc.: A non-profit organization based in Virginia, that has been expanding its effort to help patients with chronic illnesses pay for rising drug costs.

FDA’s Blood Products Hotline: Provides information for patients, and supports programs specifically designed to help ensure that patients’ voices are reflected in the regulatory decision making process.

Foundation for Women and Girls With Blood Disorders: Provides a wealth of information for women and girls dealing with bleeding disorders. Diagnosis, treatment, and care information all at your fingertips.

 

Scholarships

There are a number of educational scholarships available for people with bleeding disorders and their children, parents, partners, spouses and siblings.  HANDI has compiled a list that you can view at the NHF website by clicking here.

News from HFA

  • WFH Gene Therapy Registry: now live!

    The World Federation of Hemophilia (WFH) has developed a registry to monitor the long-term safety and efficacy of gene therapy for people with hemophilia: the WFH Gene Therapy Registry (GTR). The launch of the WFH GTR coincides with the first approvals of gene therapy for hemophilia by both the United States Food and Drug Administration (FDA) and the European Medicines Agency (EMA). The post WFH Gene Therapy Registry: now live! appeared first on Hemophilia Federation of America.

  • HFA & NHF Respond to New Blue Cross Blue Shield of Tennessee Formularies

    On January 1st, Blue Cross Blue Shield of Tennessee (BCBST) implemented formularies for their health plans (individual, small group, and large group) that remove 17+ bleeding disorders treatments from coverage. These exclusions threaten the health of potentially hundreds of Tennesseans who live with inherited blood or bleeding disorders. Patients who have been stable on their The post HFA & NHF Respond to New Blue Cross Blue Shield of Tennessee Formularies appeared first on Hemophilia Federation of America.

  • Dear Addy: Pharmacy Choice

    A community member writes in about their struggles with a friend who is pressuring them to switch to the specialty pharmacy that they work for. Addy share tips with writer as how to try to both keep their friendship and their pharmacy. The post Dear Addy: Pharmacy Choice appeared first on Hemophilia Federation of America.

  • State of the States: Q4 2022

    States win authority to restart Medicaid eligibility determinations in April The omnibus spending legislation passed late in the year by Congress will let states resume Medicaid eligibility determinations in April 2023, even if the Administration decides to continue the COVID-19 public health emergency (PHE) past that time. The National Association of Medicaid Directors (NAMD) had The post State of the States: Q4 2022 appeared first on Hemophilia Federation of America.

  • Word from Washington: December 2022

    On December 23rd, Congress passed a $1.7 trillion year-end spending package that averts a government shutdown and funds the government through September 2023. The 4,000+ page omnibus bill contains numerous important health provisions affecting Medicaid, telehealth, the accelerated approval pathway for new drugs, and more. The legislation sets a date (April 1, 2023) for the The post Word from Washington: December 2022 appeared first on Hemophilia Federation of America.