Lara Bloom
Lara Bloom | |
|---|---|
| File:LARA BLOOM BW 2.jpg | |
| Born | March 25, 1980 |
| Occupation | International Director of the Ehlers-Danlos Society |
| Years active | 2014-current |
| Relatives | Stacey (Sister) |
| Website | Website |
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
- ^ "Lara Bloom | The Ehlers Danlos Society". The Ehlers Danlos Society. Retrieved 2018-01-17.
- ^ "'Finding my miracle': The hidden struggles of living with an invisible disease". British Columbia. 2016-11-20. Retrieved 2018-01-17.
- ^ "Lara Bloom – EUPATI United Kingdom". uk.eupati.eu. Retrieved 2018-02-17.
- ^ "Bushey resident gets glimpse of 2012 Paralympic Flame". Watford Observer. Retrieved 2018-01-17.
- ^ "Lara's mission against pain". www.thejc.com. Retrieved 2018-01-17.
{{cite web}}: Cite has empty unknown parameter:|dead-url=(help) - ^ "Lara Bloom | The Ehlers Danlos Society". The Ehlers Danlos Society. Retrieved 2018-01-17.
- ^ "Lara: living with Ehler-Danlos Syndrome". Bowel & Cancer Research. Retrieved 2018-01-17.
- ^ "About the Ehlers-Danlos Society". The Ehlers Danlos Society. Retrieved 2018-01-17.
- ^ "Ehlers-Danlos National Foundation Welcomes Lara Bloom to Board of Directors". PRWeb. Retrieved 2018-01-17.
- ^ "Fighting the Good Fight Against Ehlers-Danlos Syndrome & Dysautonomia | The Dysautonomia Dispatch". www.dysautonomiainternational.org. Retrieved 2018-01-17.
- ^ "Lara Bloom". European Patients Academy.
{{cite web}}: Cite has empty unknown parameter:|dead-url=(help) - ^ "Lara: living with Ehler-Danlos Syndrome". Bowel & Cancer Research. Retrieved 2018-01-17.
- ^ "Lara's mission against pain". www.thejc.com. Retrieved 2018-01-17.
{{cite web}}: Cite has empty unknown parameter:|dead-url=(help) - ^ Antoniades, Irene (2015-01-12), Issues with My Tissues, retrieved 2018-01-17
- ^ "Hypermobility Syndromes Association » International Consortium for Ehlers-Danlos syndrome – Review and Reclassification". hypermobility.org. Retrieved 2018-01-17.
- ^ 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.
- ^ "The 2017 International Classification of the Ehlers–Danlos Syndromes" (PDF).
{{cite web}}: Cite has empty unknown parameter:|dead-url=(help) - ^ "Lara Bloom | The Ehlers Danlos Society". The Ehlers Danlos Society. Retrieved 2018-01-17.