Life and Science

Public–private partnerships also play a key role in closing the funding gap. They can facilitate knowledge-sharing, resource-pooling, and joint efforts toward finding effective treatments and cures. Advocating for international cooperation is another key strategy. Establishing global networks and collaborations that include venture capitalists and banks can facilitate the sharing of research findings, best practices, and funding opportunities. International funding bodies and foundations can also prioritize rare disease research and encourage collaboration across borders. In this panel discussion, participants will: Learn how closing the funding gap in rare diseases requires a multi-faceted approach Hear strategies for increasing government funding, collaboration among stakeholders, and international cooperation Get information on how rare disease research can benefit not only those with rare diseases and their communities, but the wider world as well. 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 on Ausha. See ausha.co/privacy-policy for more information.

Advocacy in rare disease is complex and challenging, but there are effective methods that advocates can use to communicate with the public. In this panel discussion, experts in communication, public relations, and influencing will discuss strategies and tactics to advance advocacy for rare disease. With: Mary Dunkle (National Organization for Rare Disorders, Quincy, MA) Sparsh Shah (Musician, motivational speaker, philanthropist, and patient advocate, Iselin, NJ) Anne Rancourt (National Institutes of Health, Bethesda, MD) Erika Gebel Berg, Ph.D., moderator (Science/AAAS, Washington, DC) This podcast was adapted from a mebinar co-organized by AAAS/Science and Fondation IpsenHosted on 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, who are advocates, what organizations are involved with rare disease advocacy, what determines how umbrella organizations allocate resources, and what is effective—examining success stories of when advocacy has worked. With:  Durhane Wong-Rieger, Ph.D. (Canadian Organization for Rare Disorders (CORD), Ontario, Canada) Michael Manganiello (Pyxis Partners, Washington, DC) Marc C. Patterson, M.D. (Mayo Clinic, Rochester, MN) Flaminia Macchia, M.A. (Roche, Brussels, Belgium) And Erika Gebel Berg, Ph.D., our moderatorHosted on 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. Health care systems are not equipped to provide the psychological and social support patients need. Genetic counseling is complex in the setting of undiagnosed patients. Layered on this is the complexity of supporting the mental or physical disabilities that many patients with a rare disease must manage, whether they have a diagnosis or not. The humanistic support of patients with rare diseases and their families needs to improve. In this webinar, you’ll meet experts who struggle with these issues and can help guide us on how to do better. 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 on 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 the need of patient registries. There is no international database on rare disease genotypes, no standardized nomenclature for phenotypes, and not even an agreed-upon consent process to acquire, store, and maintain such data. This deficit disadvantages patients and thwarts the development of new therapies. A universal approach is needed to gather, store, and share phenotypic and genotypic data for rare diseases. We require an accepted, trustworthy system that protects patient identities while sharing critical data needed to advance diagnosis and treatment. This free webinar will interrogate global experts on how to drive this unmet and urgent need forward.Hosted on Ausha. See ausha.co/privacy-policy for more information.