Lara Bloom

Lara Bloom (born March 25, 1980) is the President and CEO of the Ehlers-Danlos Society.[1][2] Lara is a patient expert and advocate for rare diseases, specializing in the Ehlers-Danlos syndromes.[3] In 2012 she carried the torch at the London Paralympic Games.[4] Lara Bloom was officially appointed an Academic Affiliate Professor of Practice in Patient Engagement and Global Collaboration at Penn State College of Medicine, United States of America, in March 2020. [5]

Lara Bloom
BornMarch 25, 1980
OccupationPresident and CEO of the Ehlers-Danlos Society
Years active2014-current
RelativesStacey (Sister)
WebsiteWebsite
Twitter
Instagram
Facebook

Personal Life

In 2007, she went to South Africa with the Orthodox Jewish organization Aish, and helped set up a charity for AIDS orphans called the African Social Action Project.[6]

Lara Bloom is married to her wife, and lives in London.[1] She was diagnosed with Ehlers-Danlos Syndrome at the age of 24.[7]

Patient Engagement and Global Collaboration

Commemorating ten years in the field of patient advocacy for the Ehlers-Danlos Syndromes (EDS), Hypermobility Spectrum Disorders (HSD), chronic illnesses and rare diseases, Lara Bloom was officially appointed an Academic Affiliate Professor of Practice in Patient Engagement and Global Collaboration at Penn State College of Medicine, United States of America, in March 2020. [5]

Ehlers-Danlos Activism

Lara Bloom joined the board of The Ehlers-Danlos National Foundation, now The Ehlers-Danlos Society in 2014, as a representative of EDS UK,[8][9][10] where she served the chief operating officer,[11] as well as the development manager.[7]

Lara Bloom made a documentary about how she walked a marathon, which took her eight hours and 18 minutes. Through the documentary she raised £10,500.[6] The documentary was entitled "Issues with My Tissues", and was published in 2015.[12]

Lara Bloom was one of the authors on a paper entitled "The international consortium on the Ehlers–Danlos syndromes",[13][14] as well as "The 2017 International Classification of the Ehlers–Danlos Syndromes." [15]

She is a member of the International Consortium on Ehlers-Danlos Syndromes and Related Disorders.[1]

Press Attention

Bloom's activism has gained press attention from many sources, including the Jewish Chronicle[16], Bowel & Cancer Research[17], and the Watford Observer[18]. Some topics referenced include her documentary, "Issues with My Tissues"[16], her recognition in a list of "Women of Achievement" in 2018[16], and her torch-carry in the London Paralympic Games[18].

References
  1. "Lara Bloom | The Ehlers Danlos Society". The Ehlers Danlos Society. Retrieved 2018-01-17.
  2. "'Finding my miracle': The hidden struggles of living with an invisible disease". British Columbia. 2016-11-20. Retrieved 2018-01-17.
  3. "Lara Bloom – EUPATI United Kingdom". uk.eupati.eu. Retrieved 2018-02-17.
  4. "Bushey resident gets glimpse of 2012 Paralympic Flame". Watford Observer. Retrieved 2018-01-17.
  5. "Lara Bloom, President and CEO of the Ehlers-Danlos Society, Appointed to a Professorship at Penn State College of Medicine - Pennsylvania, United States". Digital Journal.
  6. "Lara's mission against pain". www.thejc.com. Retrieved 2018-01-17.
  7. "Lara: living with Ehler-Danlos Syndrome". Bowel & Cancer Research. Retrieved 2018-01-17.
  8. "About the Ehlers-Danlos Society". The Ehlers Danlos Society. Retrieved 2018-01-17.
  9. "Ehlers-Danlos National Foundation Welcomes Lara Bloom to Board of Directors". PRWeb. Retrieved 2018-01-17.
  10. "Fighting the Good Fight Against Ehlers-Danlos Syndrome & Dysautonomia | The Dysautonomia Dispatch". www.dysautonomiainternational.org. Retrieved 2018-01-17.
  11. "Lara Bloom". European Patients Academy.
  12. Antoniades, Irene (2015-01-12), Issues with My Tissues, retrieved 2018-01-17
  13. "Hypermobility Syndromes Association » International Consortium for Ehlers-Danlos syndrome – Review and Reclassification". hypermobility.org. Retrieved 2018-01-17.
  14. Bloom, Lara; Byers, Peter; Francomano, Clair; Tinkle, Brad; Malfait, Fransiska; on behalf of the Steering Committee of The International Consortium on the Ehlers-Danlos Syndromes (2017-03-01). "The international consortium on the Ehlers–Danlos syndromes". American Journal of Medical Genetics Part C: Seminars in Medical Genetics. 175 (1): 5–7. doi:10.1002/ajmg.c.31547. ISSN 1552-4876. PMID 28306227.
  15. "The 2017 International Classification of the Ehlers–Danlos Syndromes" (PDF).
  16. "Lara's mission against pain". www.thejc.com. Retrieved 2019-02-18.
  17. "Lara: living with Ehler-Danlos Syndrome". Bowel & Cancer Research. Retrieved 2019-02-18.
  18. "Bushey resident gets glimpse of 2012 Paralympic Flame". Watford Observer. Retrieved 2019-02-18.
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