How can the medical community support the rare disease community? скачать в хорошем качестве

How can the medical community support the rare disease community?

A discussion about patient empowerment and the role of support communities featuring: Jessica Anderson, who's child has an ultra-rare genetic variant of uncertain significance. Dr. Danielle Kerkovich, the principal scientist with the Beyond Batten Disease, an Austin-based foundation established to eradicate juvenile Batten disease by raising awareness and funds to accelerate research for a treatment or cure. Moise L. Levy, M.D. who is board certified in pediatrics, dermatology, and pediatric dermatology. Dr. Levy has many years of experience in patient care, teaching, and clinical research. Currently, he is a member of the Pediatric/Adolescent Dermatology service at Dell Children’s Medical Center in Austin, Texas. Dr. Mary Elizabeth Parker Clinical Associate Professor — Department of Physical Therapy and Medical Liaison for U.R. Our Hope Marilyn Schmeidel who's daughter has been waiting for over 11 years for a diagnosis. She is the only known person in the world with her genetic mutation. Moderated by Sara Robertson, Austin PBS Presented in conjunction with a screening around the new documentary Ken Burns presents The Gene: An Intimate History.