HERSHEY, Pa., May 18, 2020 (Newswire.com) - Commemorating 10 years in the field of patient advocacy for the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), chronic illnesses, and rare diseases, Lara Bloom, President and CEO of The Ehlers-Danlos Society, was officially appointed a Professor of Practice in Patient Engagement and Global Collaboration at Penn State College of Medicine, USA, on March 11, 2020.
There has not yet been a ceremony to commemorate this appointment due to the current COVID-19 pandemic. Given the current global impact of the pandemic and the continuing ripple effect that it will have on both non-profit organizations and research programs worldwide for years to come, there has never been a more important time for engagement and collaboration.
In 2010, Bloom began her career advocating for the Ehlers-Danlos syndromes as Chief Operating Officer at Ehlers-Danlos Support UK, a UK-based charity supporting those living with, and affected by, EDS. The drive and passion to advocate for little known, misunderstood, and often misdiagnosed genetic conditions saw Bloom take on ambassadorial and advisory roles in rare disease and patient-led organizations, such as Global Genes, Rare Diseases International, and GenTAC Alliance Patients. Bloom also serves on the steering committee of The International Consortium on EDS and HSD.
The International Consortium is an independent working group of medical professionals and experts, organized into committees and groups based on medical specialty and research interests, and coordinated by the Steering Committee. Bloom and The Ehlers-Danlos Society are dedicated to always bringing in the community voice to all they do, with a patient expert sitting on every working group and committee of the consortium.
Bloom speaks regularly as the keynote speaker at global conferences, corporate and fundraising events, and academic lectures. As a long-time advocate and EDS patient herself, Bloom is able to represent the patient voice with clear, concise, emotive and impassioned experience. Bloom offers her experience as a leading patient in rare diseases, charity growth, development, and patient engagement, presenting to medical students, professionals, and supporting specialists in the field.
Dr. Thomas Ma, Professor and Chair, Department of Medicine, Penn State College of Medicine and Penn State Health Milton S. Hershey Medical Center, welcomed Professor Bloom to the Penn State community, noting her decade of accomplishments in the fields of patient engagement and global collaboration. “She has shown what is possible when scientists, clinicians, and patients are all gathered at the same table to work on the difficult problems involved in the Ehlers Danlos-syndromes. Professor Bloom has been a fantastic advocate for patients with Ehlers-Danlos syndromes and has had a huge positive impact on bringing global awareness to EDS. Now that we are all engaged in fighting the COVID-19 pandemic, we are critically aware that this must be a global fight. We look forward to her partnering with us.”
Drs. Jane Schubart and Rebecca Bascom, Penn State College of Medicine faculty, echoed Dr. Ma’s welcome. “The Ehlers-Danlos Society International Consortium and CoMorbidity Coalition have been groundbreaking accomplishments, and great credit goes to Professor Bloom’ vision and leadership,” said Dr. Schubart. Dr. Bascom added, “Penn State’s growing research presence in the Ehlers-Danlos syndromes will be further energized by her presence on our faculty.”
In addition to this announcement being made during a global pandemic - it is also during the month of May, which is EDS and HSD Awareness month, a time that brings our international community even closer together, and although this year is unique in its circumstances, it is now more important than ever to come together as a virtual community, and we believe this newly appointed position will help strengthen those connections even deeper.
ABOUT THE EHLERS-DANLOS SOCIETY
The Ehlers-Danlos Society is a global community of patients, caregivers, health care professionals, and supporters, dedicated to saving and improving the lives of those affected by the Ehlers-Danlos syndromes.
Headquartered in Baltimore, MD, The Ehlers-Danlos Society is a registered 501c3 nonprofit organization in the United States and a registered charity in the United Kingdom. The Ehlers-Danlos Society staff team has now grown to 21 members of staff across the world, proudly working to provide global learning conferences, collaborative research and education initiatives, awareness campaigns, advocacy, community-building, and care for the EDS and HSD population.
Source: The Ehlers-Danlos Society