TY - JOUR
T1 - The power of patient-led global collaboration
AU - Bloom, Lara
AU - Schubart, Jane
AU - Bascom, Rebecca
AU - Hakim, Alan
AU - Francomano, Clair A.
N1 - Funding Information:
The authors wish to thank all the members within the Coalition for their incredible contributions over the past few years to enable this collaborative approach and outcomes. The authots thank Maxfield Whitehead-Zimmers for facilitating the Coalition’s activities at Penn State. The authors would also like to thank our generous supporters including, but not limited to the Patient-Centered Outcomes Research Institute (PCORI), The Clinical and Translational Science Institute Award (CTSI), generous individual donors. With additional thanks to the Balance Arts Center in NYC and Penn State Health Milton S. Hershey Medical Center for donating the space for us to meet in over the years. Coalition Members: Professor Lara Bloom, The Ehlers-Danlos Society; Dr. Alan Hakim, MB, MA, FRCP, The Ehlers-Danlos-Society; Dr. Clair Francomano, MD, IU School of Medicine; Shani Weber, The Ehlers-Danlos Society; Marisa Bergfield, The Ehlers-Danlos Society; Kara Kukfa, The Kennedy Forum; Bridget Canela, Patient Representative; Dr. Melissa Russo, MD, Women and Infants Hospital Rhode Island; Dr. Isabelle Brock, MD; Professor Brianna Cardenas, University of La Verne; Dr. Rebecca Bascom, MD, MPH, Penn State Hershey Medical Center; Nancy Feracco, Bobby Jones Chiari Syringomyelia Foundation (CSF); Dr. Jane Schubart, MBA, MS, PhD, Penn State College of Medicine; Dr. Peter Byers, MD, Department of Laboratory Medicine and Pathology and Department of Medicine (Medical Genetics); Courtney Rabb, The Mast Cell Disease Society; Sabra Thomas, Patient Representative; Larry Constant Jr., Patient Representative; Dr. Laura Pace, MD, PhD; Courtney O’Brien, Patient Representative; Jennifer Schoon, PT, DPT; Marina Lombardi, Patient Representative; Jan Hempstead, RN, The Mast Cell Disease Society; Noni Dickerson; Professor Petra Klinge, Brown University; Dr. Aurora Richards-Stipnieks, The Coalition Against Pediatric Pain; Dr. Alan Pocinki, MD, FACP; Francie Fitzgerald, Patient Representative; Dr. Anne Maitland, American Academy of Allergy, Asthma, and Immunology (AAAAI); Dr. Amanda Miller, Penn State University College of Medicine; Dorothy Poppe, Bobby Jones Chiari Syringomyelia Foundation (CSF); Dr. Satish Raj, MD, MSCI, FRCPC, Calgary Autonomic Investigation & Management Clinic; Maggie Buckley, Patient Representative; Professor Lauren Stiles, Dysautonomia International.
Publisher Copyright:
© 2021 Wiley Periodicals LLC.
PY - 2021/12
Y1 - 2021/12
N2 - In late 2017, the global nonprofit, The Ehlers-Danlos Society (TEDS), was awarded a “Pipeline to Proposal” Tier A award from the Patient-Centered Outcomes Research Institute (PCORI). The goal of this application was to form a team of patients, researchers, other community support groups and stakeholders who are focused on establishing the Ehlers-Danlos Comorbidity Coalition to address the common health issues associated with this group of high morbidity, high disease burden conditions. The ongoing Coalition that is now funded by individual donors and expanding in its mission and members, is an example of successful collaboration spanning over borders and priorities.
AB - In late 2017, the global nonprofit, The Ehlers-Danlos Society (TEDS), was awarded a “Pipeline to Proposal” Tier A award from the Patient-Centered Outcomes Research Institute (PCORI). The goal of this application was to form a team of patients, researchers, other community support groups and stakeholders who are focused on establishing the Ehlers-Danlos Comorbidity Coalition to address the common health issues associated with this group of high morbidity, high disease burden conditions. The ongoing Coalition that is now funded by individual donors and expanding in its mission and members, is an example of successful collaboration spanning over borders and priorities.
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U2 - 10.1002/ajmg.c.31942
DO - 10.1002/ajmg.c.31942
M3 - Review article
C2 - 34741496
AN - SCOPUS:85118476872
SN - 1552-4868
VL - 187
SP - 425
EP - 428
JO - American Journal of Medical Genetics, Part C: Seminars in Medical Genetics
JF - American Journal of Medical Genetics, Part C: Seminars in Medical Genetics
IS - 4
ER -