Lara Bloom
| Lara Bloom | |
|---|---|
| Born | March 25, 1980 Bushey, England |
| 🏳️ Nationality | British |
| 🏫 Education | BA Hons in Global Politics and International Relations, 2013 Patient Representatives on Medicines Research & Development, 2015 |
| 🎓 Alma mater | Birkbeck, University of London European Patients' Academy (EUPATI) |
| 💼 Occupation | public health activist [1] |
| 📆 Years active | 2010 - present |
| Known for | Health advocacy on Ehlers-Danlos syndromes (EDS) |
| 🌐 Website | https://www.larabloom.com/ |
Lara Bloom is a British public health activist based in London, UK.[2][3] Bloom is the President and CEO of the Ehlers-Danlos Society[4], which raises awareness around the world for rare, chronic and invisible diseases with expertise in the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD) and related disorders.[5][6] She is an academic affiliate professor of practice in Patient Engagement & Global Collaboration at Penn State College of Medicine.
Personal Life
Bloom was diagnosed with Ehlers-Danlos Syndrome (hypermobile EDS)[7] and she was not diagnosed with the EDS condition until she was 24 years old.[8][9] According to Trend-able.com, "her sister was also diagnosed with EDS and it is thought to be from their father, although he is far less symptomatic".[10]
In April 2011, she participated and completed the London Marathon despite fracturing her foot at the 13th mile and raised £10,500 for The Ehlers-Danlos Support UK.[9][11] Lara also carried the torch at London 2012 Games Paralympic Torch Relay.[9]
Lara was featured in a 2015 documentary entitled Issues with My Tissues directed by Irene Antoniades, which followed Lara's journey as she became the first known person with Ehlers-Danlos syndromes (EDS) to walk the London Marathon.[12]
Ehlers-Danlos Society
Bloom ran The Ehlers-Danlos Support UK for five years, from 2010-2015, before joining the Ehlers-Danlos Society.[11] In 2010, Bloom began her career advocating for the Ehlers-Danlos syndromes as a volunteer and then appointed as the CEO at The Ehlers-Danlos Support UK.[13] From 2013–2015, she was part of the specialized rheumatology CRG (Clinical Reference Group) working with the NHS and she collaborated with umbrella organizations lobbying in parliament.[14][15]
According to WEGO Health, "Bloom also took on ambassadorial and advisory roles in rare disease and patient-led organizations, such as the Global Strategic Advisor for Global Genes and Advocacy Committee Member for Rare Diseases International, Co-Investigator in the NIHR CONCORD: CO-ordiNated Care Of Rare Diseases, Expert Advisor in the European Reference Network Groups RECONNECT & VASCERN, Expert Advisor to PARADIGM & EPF, Working Group Member of the GenTAC Alliance Patients and a Patient Group Consultative Forum Member for the Medicines and Healthcare Products Regulatory Agency".[16] In 2016, she completed her expert-level training in medicines research and development and became a fellow of the European Patients Academy (EUPATI).
In January 2020, Lara Bloom participated in a campaign entitled "I am Number 17". The purpose of the Takeda-led campaign is to create awareness about how 1 in 17 people in the UK is impacted by rare diseases. Lara was one of 17 participants in the campaign.[17] She was paired with photographer Ross Ferguson[11] to help illustrate her personal story with a rare disease.[18]
Commemorating ten years in the field of patient advocacy, she was officially appointed a Professor of Practice in Patient Engagement and Global Collaboration at Penn State College of Medicine, USA, on March 11, 2020.[19]
Selected Publications
- How are patients with rare diseases and their carers in the UK impacted by the way care is coordinated? An exploratory qualitative interview study[20]
- Survey of Ehlers?Danlos Patients’ ophthalmic surgery experiences[21]
- The international consortium on the Ehlers–Danlos syndromes[22][23]
- The 2017 International Classification of the Ehlers–Danlos Syndromes[24][25]
References
- ↑ Simpson, Amy; Bloom, Lara; Fulop, Naomi J.; Hudson, Emma; Leeson-Beevers, Kerry; Morris, Stephen; Ramsay, Angus I. G.; Sutcliffe, Alastair G.; Walton, Holly; Hunter, Amy (10 February 2021). "How are patients with rare diseases and their carers in the UK impacted by the way care is coordinated? An exploratory qualitative interview study". Orphanet Journal of Rare Diseases. 16 (1): 76. doi:10.1186/s13023-020-01664-6. ISSN 1750-1172. Retrieved 7 September 2022.
- ↑ Bloom, Lara; Schubart, Jane; Bascom, Rebecca; Hakim, Alan; Francomano, Clair A. (December 2021). "The power of patient-led global collaboration". American Journal of Medical Genetics Part C: Seminars in Medical Genetics. 187 (4): 425–428. doi:10.1002/ajmg.c.31942. Retrieved 7 September 2022.
- ↑ Louie, Anita; Meyerle, Catherine; Francomano, Clair; Srikumaran, Divya; Merali, Farhan; Doyle, Jefferson J.; Bower, Kraig; Bloom, Lara; Boland, Michael V.; Mahoney, Nicholas; Daoud, Yassine; Singman, Eric L. (April 2020). "Survey of Ehlers?Danlos Patients' ophthalmic surgery experiences". Molecular Genetics & Genomic Medicine. 8 (4). doi:10.1002/mgg3.1155. Retrieved 7 September 2022.
- ↑ Marshall, Michael. "The genetic disorder that makes shoulders pop out of sockets". www.bbc.com. Retrieved 7 September 2022.
- ↑ Bloom, Lara; Byers, Peter; Francomano, Clair; Tinkle, Brad; Malfait, Fransiska (March 2017). "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. Retrieved 7 September 2022.
- ↑ "Lara Bloom". The Ehlers Danlos Society. Retrieved 7 September 2022.
- ↑ "'Finding my miracle': The hidden struggles of living with an invisible disease". British Columbia. 2016-11-20. Retrieved 2021-10-04.
- ↑ https://health.usnews.com/wellness/articles/2016-11-11/ehlers-danlos-syndrome-more-than-just-stretchy-skin-and-bendy-joints
- ↑ 9.0 9.1 9.2 "Bushey resident gets glimpse of 2012 Paralympic Flame". Watford Observer. Retrieved 2021-10-04.
- ↑ "Meet Lara Bloom". www.trend-able.com. Retrieved 2021-10-04.
- ↑ 11.0 11.1 11.2 "Mission Against Pain Ehlers Danlos Syndrome". www.thejc.com. Retrieved 2021-10-04. Unknown parameter
|url-status=ignored (help) - ↑ Antoniades, Irene (12 January 2015). "Issues with My Tissues". EDS Support. Retrieved 7 September 2022.
- ↑ "Lara Bloom, President and CEO of the Ehlers-Danlos Society, Appointed to a Professorship at Penn State College of Medicine - Pennsylvania, United States". www.newswire.com. Retrieved 2021-10-04.
- ↑ "Lara Bloom". Mental Health America. Retrieved 2021-10-04.
- ↑ "Episode #72: Lara Bloom". Harper Spero. Retrieved 2021-10-04.
- ↑ "Health - Lara Bloom". www.wegohealth.com. Retrieved 2021-10-04. Unknown parameter
|url-status=ignored (help) - ↑ "I Am Number Seventeen - Lara". I Am Number Seventeen. Retrieved 2021-10-04.
- ↑ "Portraits". Ross Ferguson Photography. Retrieved 2021-10-04.
- ↑ "President and CEO Lara Bloom Appointed to Professorship at Penn State College of Medicine". The Ehlers Danlos Society. 2020-05-18. Retrieved 2021-10-04.
- ↑ Simpson, Amy; Bloom, Lara; Fulop, Naomi J.; Hudson, Emma; Leeson-Beevers, Kerry; Morris, Stephen; Ramsay, Angus I. G.; Sutcliffe, Alastair G.; Walton, Holly; Hunter, Amy (2021-02-10). "How are patients with rare diseases and their carers in the UK impacted by the way care is coordinated? An exploratory qualitative interview study". Orphanet Journal of Rare Diseases. 16 (1): 76. doi:10.1186/s13023-020-01664-6. ISSN 1750-1172. PMC 7874609 Check
|pmc=value (help). PMID 33568181 Check|pmid=value (help). - ↑ Louie, Anita; Meyerle, Catherine; Francomano, Clair; Srikumaran, Divya; Merali, Farhan; Doyle, Jefferson J.; Bower, Kraig; Bloom, Lara; Boland, Michael V.; Mahoney, Nicholas; Daoud, Yassine (2020). "Survey of Ehlers?Danlos Patients' ophthalmic surgery experiences". Molecular Genetics & Genomic Medicine. 8 (4): e1155. doi:10.1002/mgg3.1155. ISSN 2324-9269. PMC 7196452 Check
|pmc=value (help). PMID 31989797. - ↑ Bloom, Lara; Byers, Peter; Francomano, Clair; Tinkle, Brad; Malfait, Fransiska (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.
- ↑ Bloom, Lara; Byers, Peter; Francomano, Clair; Tinkle, Brad; Malfait, Fransiska (2017-03-01). "The international consortium on the Ehlers-Danlos syndromes". American Journal of Medical Genetics Part C: Seminars in Medical Genetics. 175: 5–7. doi:10.1002/ajmg.c.31547.
- ↑ Malfait, Fransiska; Francomano, Clair; Byers, Peter; Belmont, John; Berglund, Britta; Black, James; Bloom, Lara; Bowen, Jessica M.; Brady, Angela F.; Burrows, Nigel P.; Castori, Marco. "The 2017 international classification of the Ehlers-Danlos syndromes". American Journal of Medical Genetics. Part C, Seminars in Medical Genetics. 175 (1): 8–26. doi:10.1002/ajmg.c.31552. ISSN 1552-4876. PMID 28306229.
- ↑ Malfait, Fransiska; Francomano, Clair; Byers, Peter; Belmont, John; Berglund, Britta; Black, James; Bloom, Lara; Bowen, Jessica; Brady, Angela; Burrows, Nigel; Castori, Marco (2017-03-01). "The 2017 International Classification of the Ehlers-Danlos Syndromes". American Journal of Medical Genetics Part C: Seminars in Medical Genetics. 175: 8–26. doi:10.1002/ajmg.c.31552.
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