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John Carey, MD, MPH

John C. Carey, MD, MPH, is Professor and formerly Vice Chair of Academic Affairs (2000-2016), Department of Pediatrics, at the University of Utah School of Medicine. Throughout his career, Dr. Carey has been interested in birth defect syndromes and the care of children with these conditions.  Dr. Carey graduated from Villanova University in 1968 with an A.B. and obtained his M.D. from Georgetown University School of Medicine in 1972.  He trained in pediatrics and genetics & dysmorphology as a resident and fellow at the University of California San Francisco, 1972-1979 and obtained an M.P.H. from the University of California at Berkeley in 1976.  Dr. Carey joined the faculty at University of Utah Health Sciences Center in 1979 and became Chief of the Division of Medical Genetics in 1985; he stepped down as Chief in 1999 to assume the role as Editor-in-Chief of the American Journal of Medical Genetics.  He held that editorial position from 2001-2016 and is now Editor in chief Emeritus and Associate Editor of the Journal.  Dr. Carey established the Medical Genetics Fellowship Program at the University of Utah in 1985 and was the Program Director until 2014 but continues as a mentor and teacher in the Program. Dr. Carey’s research focus has been in congenital malformations and syndrome delineation.  He has authored or co-authored over 300 papers, chapters, and editorials for scientific journals.  He also co-authored the widely-used textbook, “Medical Genetics,” by Jorde, Carey, & Bamshad, the 6th edition upcoming in 2019, and is a coeditor of the 4th edition of the book, “Cassidy & Allanson’s Management of Genetic Syndromes”. Dr Carey serves as Chair of the Scientific & Medical Advisory Board of the Support Organization for Trisomy 18, 13, and Related Disorders (SOFT) and is on the Board of Directors.

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Lydia Seiders


Lydia Seiders, is a passionate advocate, driven to provoke positive changes globally.  Her background includes roughly 20 years of advocacy and 15 years of policy work.  She serves as an adviser globally for grassroots efforts, with work published on national and international platforms.  In 2016, her oldest daughter was diagnosed with a rare form of bone marrow failure.  At her daughter’s request, she worked endlessly to create a cause within her daughter’s fight and has been successful on an international scale.  Worldwide, she partners with bone marrow registries and foundations to ensure patients have accurate information pertaining treatment options. 


As a result of this work, she was appointed as the first Volunteer Maryland State Ambassador for the NORD’s Rare Action Network in 2017.  Nationwide, she partners with advocates to act on policy impacting the rare disease community. Statewide, she leads educational initiatives and develops state based campaigns to increase awareness.        

David LaGreca


David LaGreca, Principal of David LaGreca & Associates, has spent over 25 years helping Boards and management work together in service of the mission of their businesses and organizations.  He has extensive experience assisting corporate and nonprofit executives with board relations, strategy, management coaching, and refining operations. 


Since 1999, David has been working with rare disease organizations ranging from individual disease groups to national associations and pharmaceutical companies.  His client engagements range from a facilitated two-day meeting for the patient advocacy groups supported by one pharmaceutical company to a series of meetings with a national patient advocacy group.   He is a member of the founding faculty of the Professionals for Patient Advocacy in the Life Sciences’ (PPALS) Patient Advocacy Certificate Training in partnership with Sanford Research.


David received his MBA from Columbia University School of Business.  He was the Administrator for the Department of Surgery, Memorial Sloan Kettering Cancer Center.  Prior to his MBA, he taught at Boston and Providence Colleges, wrote a newspaper column in Rhode Island, and spent over twenty years working with community-based health care organizations caring for terminal patients.  David also graduated from the Katholieke Universiteit te Leuven (STB, MA & PhD cand.), Belgium.


He has served on several nonprofits Boards and chaired two of them.  He is a founder and former Board Chair of an intermediary advocacy organization focused on out-of-school, out-of-work young adults and currently serves as Treasurer of a Board in his community.  In addition to living in Belgium for four years, he has lived, studied and worked in England, German, Italy, Jamaica, Massachusetts, Rhode Island, Spain, and Tanzania.  

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Maika G. Mitchell, PhD

Maika G. Mitchell, PhD, is Senior Director of Administration and Operations at NYU Langone Health, School of Medicine. Throughout her career, Dr. Mitchell has been interested in molecular biology with specific interest in oncology, infectious disease and molecular medicine. Dr. Mitchell graduated from Hampton University in Biology Pre-Med, a Master’s of Science in Chemistry/Biomaterials from Polytechnic University at NYU Tandon School of Engineering and a Doctorate in Human Biology/mutation biology from Edith Cowan University.  Dr. Mitchell joined the faculty as an adjunct Professor at the University of Maryland Global Campus teaching Biotechnology and Regulatory Affairs Capstone course each semester.  She holds several that editorial and reviewer positions including Annals of Medicine and Surgery (Elsevier).  She has authored three text books, various papers, chapters, and editorials for scientific journals.  Dr. Mitchell, a career lab scientist and technology leader with more than 25 years’ progressive experience overseeing and developing clinical research laboratories for non-profit, for-profit, academia, and government.

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Cristina Hurtado Tripiana

Cristina Hurtado Tripiana, a young woman from Barcelona, Spain, has a strong academic background in biology and genetics. She pursued her studies at the University of Barcelona, where she completed a Bachelor's degree in Biology and a Master's degree in Genetics and Genomics. In addition to her scientific expertise, Cristina also holds a Master's degree in Science Communication from the University Pompeu Fabra, emphasizing her interest in effectively conveying complex scientific concepts to the public.

While Cristina was previously involved in research, she has currently dedicated her career to science communication. She is currently employed at the European Science Communication Company (ESCI), a non-profit organization based in Germany. In this role, Cristina strives to bridge the gap between scientific advancements and the general public, promoting understanding and engagement with science.

Cristina's personal connection to Wolf-Hirschhorn Syndrome adds a special significance to her work. Her sister is affected by this rare chromosomal deletion syndrome. As an advisor for Liv4TheCure, Cristina is determined to contribute as much as possible to the progress of science and technology, particularly in the field of rare chromosomal deletion syndromes.

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