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National Bleeding Disorders Foundation

From Wikipedia - Reading time: 6 min

National Bleeding Disorders Foundation
Founded1948; 76 years ago (1948)
FocusAwareness, care, and treatment of inheritable blood and bleeding disorders
Area served
United States
MethodHemophilia research, public policy and education
Key people
Philip M. Gattone M.Ed.
President & Chief Executive Officer [1]
Websitehemophilia.org

The National Bleeding Disorders Foundation (NBDF) is a United States patient advocacy organization for the care and treatment of inheritable blood and bleeding disorders such as hemophilia and von Willebrand disease. Founded in 1948, NBDF, then known as the National Hemophilia Foundation, helps secure funding for treatment centers and develops national guidelines for treatment and health care policy. The organization also serves as a central point for information on the disorders.

History

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The National Bleeding Disorders Foundation was founded in 1948, as the first national hemophilia advocacy organization in the United States.[2] One of its early initiatives was to secure funding for Comprehensive Hemophilia Diagnostic and Treatment Centers (HTC).[2]

In 1993, the foundation received media coverage of its efforts to hold health care company Baxter International accountable for infecting 10,000 hemophiliac members with AIDS due to HIV contaminated clotting products.[3]

In 1994, the NHF lobbied the FDA's blood products advisory committee (BPAC) to add Parvovirus B19 and Hepatitis A risk warnings to plasma products.[4]

In 1998, the NHF convened the first Women with Bleeding Disorders Task Force, to address the difficulties women had in getting proper treatment.[5]

In 2008, former NHF Board Chair and health advocate Val Bias became the group's CEO.[6]

In 2013, actress and comedian Alex Borstein became the NHF's spokesperson for genetic testing.[7] In October, Borstein hosted the NHF's inaugural "What's So Bloody Funny" comedy fundraiser.[8]

In 2016, the NHF began recognizing March as Bleeding Disorders Awareness Month to raise awareness of hemophilia and von Willebrand disease among stakeholders.[9] Also in 2016, as part of the foundation's awareness efforts, it started the Red Tie Campaign, with the symbol representing blood and the community coming together to help those with inheritable blood and bleeding disorders.[10]

In 2018, the NHF launched an advocacy campaign on Capitol Hill in Washington, DC, where 500 members of the bleeding disorders community met with 300 members of Congress and their staff.[10]

In 2019, CEO Bias retired and was replaced as CEO and president by Leonard Valentino, MD.[6][1]

In July 2022, the organization petitioned the FDA to require a risk evaluation and mitigation strategy (REMS) to ensure the safety of valoctocogene roxaparvovec and etranacogene dezaparvovec, two gene therapy treatments the FDA was considering for approval for hemophilia treatment.[11]

On August 17, 2023, the organization announced they rebranded{{cn|date=August 2023}} to the National Bleeding Disorders Foundation (NBDF) after 75 years. In addition to the new name, the National Bleeding Disorders Foundation unveiled a new visual identity and logo intended to represent a wide range of inheritable blood and bleeding disorders and a new tagline: Innovate | Educate | Advocate.

In 2024, Len Bias, MD, retired and was replaced as President and CEO by Philip M. Gattone, M.Ed.

In April 2024, the organization transitioned from Hemophilia.org to Bleeding.org. Why? This URL perfectly encapsulates NBDF's commitment to serving a diverse community of individuals affected by inheritable bleeding disorders.

Activities

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The NBDF raises money and awareness of blood and bleeding disorders and supports research to end the diseases.[12] Its efforts include lobbying Congress to help people with inheritable blood and bleeding disorders.[4][12]

The NBDF honors Bleeding Disorders Awareness Month, to raise awareness of inheritable blood and bleeding disorders among the public, lawmakers, medical professionals and others.[9] Related annual fundraising campaigns are called Red Tie Campaigns.[10] The NBDF also hosts comedy fundraisers to support its efforts.[8]

The organization also organizes an annual national Unite Day event to encourage community participation in the foundation's mission.[10] The day includes a Unite for Bleeding Disorders Walk.[10]

The NBDF also awards the Jason Fulton Memorial Scholarship, to members of its two year National Youth Leadership Institute (NYLI) professional development program who help the hemophiliac community.[13]

References

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  1. ^ a b "A Conversation with Dr. Leonard Valentino". Hemaware. August 24, 2020. Retrieved May 4, 2022.
  2. ^ a b Baker, Judith; Crudder, Sally; Riske, Brenda; Bias, Val; Forsberg, Ann (October 10, 2011). "A Model for a Regional System of Care to Promote the Health and Well-Being of People with Rare Chronic Genetic Disorders". American Journal of Public Health. 95 (11): 1910–1916. doi:10.2105/AJPH.2004.051318. PMC 1449458. PMID 16195525.
  3. ^ "The High Price Of Bad Blood". Bloomberg. September 26, 1003. Retrieved May 4, 2022.
  4. ^ a b "TENTH REPORT BY THE COMMITTEE ON GOVERNMENT REFORM AND OVERSIGHT" (PDF). Congress.gov. August 2, 1996. Retrieved May 4, 2022.
  5. ^ "First Decade Defines National Hemophilia Foundation's Women's Programs". Hemaware. April 15, 2014. Retrieved May 4, 2022.
  6. ^ a b "Val Bias, 63, crusader for better care for those with hemophilia and HIV/AIDS". Buffalo News. January 12, 2022. Retrieved May 4, 2022.
  7. ^ "Hemophilia Humor". Hemaware. August 30, 2017. Retrieved May 4, 2022.
  8. ^ a b "Comedic Fundraising". Hemaware. August 30, 2017. Retrieved May 4, 2022.
  9. ^ a b "NHF, Others Rally Attention to Bleeding Disorders for Awareness Month". Hemaware. February 25, 2022. Retrieved May 4, 2022.
  10. ^ a b c d e "Red Tie Campaign Aims to Protect Access to Affordable, Quality Care for People with Bleeding Disorders". Hemophilia News Today. March 14, 2018. Retrieved May 4, 2022.
  11. ^ Karins, Jessica (July 18, 2022). "Group Petitions FDA To Require REMS If It Approves Hemophilia Gene Therapies". InsideHealthPolicy. Retrieved September 16, 2022.
  12. ^ a b "Sept. 18 is 'Unite Day' for Bleeding Disorders Community". Hemophilia News Today. August 27, 2021. Retrieved May 4, 2022.
  13. ^ "Scholarship Pays Tribute to the Legacy of Late Patient Jason Fulton". Hemophilia News Today. January 3, 2022. Retrieved May 4, 2022.
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Licensed under CC BY-SA 3.0 | Source: https://en.wikipedia.org/wiki/National_Bleeding_Disorders_Foundation
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