Lara Bloom

Lara Bloom
Born March 25, 1980
Residence London
Occupation International Director of the Ehlers-Danlos Society
Years active 2014-current
Relatives Stacey (Sister)
Website Website
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Lara Bloom (born March 25, 1980) is the International Director 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]

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.[5]

Lara Bloom is married to her wife, and lives in London.[6] She was diagnosed with Ehlers-Danlos Syndrome at the age of 24.[7]

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.[12]

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.[13] The documentary was entitled "Issues with My Tissues", and was published in 2015.[14]

Lara Bloom was one of the authors on a paper entitled "The international consortium on the Ehlers–Danlos syndromes",[15][16] as well as "The 2017 International Classification of the Ehlers–Danlos Syndromes." [17]

She is a member of the International Consortium on Ehlers-Danlos Syndromes and Related Disorders.[18]

Citations

  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's mission against pain". www.thejc.com. Retrieved 2018-01-17.
  6. ↑ "Lara Bloom | The Ehlers Danlos Society". The Ehlers Danlos Society. 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. ↑ "Lara: living with Ehler-Danlos Syndrome". Bowel & Cancer Research. Retrieved 2018-01-17.
  13. ↑ "Lara's mission against pain". www.thejc.com. Retrieved 2018-01-17.
  14. ↑ Antoniades, Irene (2015-01-12), Issues with My Tissues, retrieved 2018-01-17
  15. ↑ "Hypermobility Syndromes Association » International Consortium for Ehlers-Danlos syndrome – Review and Reclassification". hypermobility.org. Retrieved 2018-01-17.
  16. ↑ 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.
  17. ↑ "The 2017 International Classification of the Ehlers–Danlos Syndromes" (PDF).
  18. ↑ "Lara Bloom | The Ehlers Danlos Society". The Ehlers Danlos Society. Retrieved 2018-01-17.
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