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By Life and Science
The podcast currently has 34 episodes available.
Public–private partnerships also play a key role in closing the
In this panel discussion, participants will:
More info in our website : https://www.fondation-ipsen.org/webinar/webinar-advocacy-in-rare-disease-closing-the-funding-gap/
This podcast was adapted from a webinar co-organized by AAAS Science Magazine and Fondation Ipsen.
Hosted by Ausha. See ausha.co/privacy-policy for more information.
Advocacy in rare disease is complex and challenging, but there are
With:
Mary Dunkle (National Organization for Rare Disorders, Quincy, MA)
This podcast was adapted from a mebinar co-organized by AAAS/Science and Fondation Ipsen
Hosted by Ausha. See ausha.co/privacy-policy for more information.
In this podcast, first episode in the 2023 Science/AAAS Fondation Ipsen series on advocacy in rare disease, our guests examine the advocacy landscape, asking: what does advocacy entail,
With:
Durhane Wong-Rieger, Ph.D. (Canadian Organization for Rare Disorders (CORD), Ontario, Canada)
And Erika Gebel Berg, Ph.D., our moderator
Hosted by Ausha. See ausha.co/privacy-policy for more information.
"The profoundly personal side of rare disease: Humanizing the therapeutic journey of patients" : a free podcast recorded during a webinar organized by Science Magazine and Fondation Ipsen.
Our guests:
Kathleen Bogart, Ph.D. (Oregon State University, Corvallis, Oregon)
Amrit Ray, M.D., M.B.A. (Physician researcher/Rare disease advocate, New Haven, CT)
Alanna Yee (Encephalitis411, Edmonton, Canada)
Hosted by Ausha. See ausha.co/privacy-policy for more information.
During this podcast (recorded during a webinar co-organized by Fondation Ipsen and Science Magazine), our guests (all experts in rare disease) discussed about
Hosted by Ausha. See ausha.co/privacy-policy for more information.
We are on the brink of new solutions that include accessing specialized
https://www.fondation-ipsen.org/webinar/webinar-bringing-rare-disease-care-to-underserved-populations/
with:
Consuelo Wilkins, M.D., MSCI (Vanderbilt University Medical Center, Nashville, TN)
Linda Goler Blount, M.P.H. (Black Women’s HealthImperative, Atlanta, GA)
Nakela L. Cook, M.D., M.P.H. (Patient-Centered Outcomes Research Institute (PCORI), Washington, DC)
Jamie Sullivan, M.P.H. (EveryLife Foundation, Washington, DC)
Sean Sanders, Ph.D. (Science/AAAS, Washington, DC; moderator)
This podcast is adapted from a webinar broadcast by Science magazine, with the sponsorship of Fondation Ipsen.
Hosted by Ausha. See ausha.co/privacy-policy for more information.
New drug design methodologies allow us to contemplate designer medicines for
This podcast is the audio recording of a webinar launched by AAAS / Science Magazine and Fondation Ipsen.
With:
Genine Winslow, M.Sc. (Chameleon Biosciences, San Anselmo, CA)
Tiina Urv, Ph.D. (National Institutes of Health, Bethesda, MD)
Viviana Giannuzzi, Pharm.D., Ph.D. (Fondazione Gianni Benzi Onlus, Bari, Italy)
Sean Sanders, Ph.D. (Science/AAAS, Washington, DC)
Hosted by Ausha. See ausha.co/privacy-policy for more information.
This podcast is adapted from a webinar launched by Science Magazine, with the support of Fondation Ipsen.
Innovation hubs could provide a viable option to leverage common goals and opportunities, providing shared protocols for handling phenotypic, clinical, and genetic data, while also prioritizing and amplifying the voices of patients living with a rare disease. They could bring together the best international policy structures to streamline efficient and effective medical and scientific advances in rare disease detection, diagnosis, and treatment. This webinar brings together key opinion leaders to discuss the current and future needs of patients, and how innovators, doctors, scientists, drugmakers, and policymakers can work efficiently together to deliver solutions to the millions of diagnosed and undiagnosed patients in need.
With:
Marshall Summar, M.D. (Children’s National Hospital, Washington, DC)
Zizi Imatorbhebhe, M.B.A., M.S., P.M.P (ERGOMED PLC, Raleigh, NC)
Anna Lehman, M.D. (University of British Columbia and Vancouver General Hospital, Vancouver, Canada)
Vinodh Narayanan, M.D. (TGen, Phoenix, Arizona)
Sean Sanders, Ph.D. (Moderator, Science/AAAS, Washington, DC)
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Rare disease detection is an interdisciplinary and international
during this podcast, our diverse panel of thought leaders will
with:
William A. Gahl, M.D., Ph.D. (National Institutes of Health, Bethesda, MD)
Cristina Casanova Might, B.S., M.B.A. (Undiagnosed Diseases Network Foundation, Birmingham, Alabama)
Avril Daly (EURORDIS, Paris, France)
Charlene Son Rigby, B.A., M.B.A. (RARE-X, Aliso Viejo, CA)
Moderator: Sean Sanders, Ph.D. (Science/AAAS, Washington, DC)
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Pick any two humans on Earth and analysis will show that their DNA is around 99.9% identical. But that tiny 0.1% difference, in combination with our environment, is what makes us unique. We each have a singular experience of the world—the interactions we have, the food we eat, the diseases we suffer. In this final webinar in our 2021 series on rare diseases, we will take a critical look at the importance of understanding our rarity and uniqueness as a way to understand the human condition, our needs, and health. We will explore the importance of being “rare” and move past our innate desire for homogeneity and the comfort of conformity, to embrace heterogeneity and difference. Valuing differences is a pathway to growth and progress as individuals and societies. Having explored the unique challenges of people with rare diseases, might we argue that all disease is unique for the person who endures it?
With:
Ioannis Thomas Pavlidis, Ph.D. (University of Houston, Houston, Texas)
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The podcast currently has 34 episodes available.