Fondation Ipsen and AAAS/Science magazine are partners for the "Life & Science" series of webinars. For the first time, all of the episodes are available as podcasts.
Everytime, the invited scientists, all internationaly recognized experts, debate and share knowledge and expertise. The topics are wide but always focused on well-being, health and society.
Hosted on Ausha. See ausha.co/privacy-policy for more information.
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 by Ausha. See ausha.co/privacy-policy (https://ausha.co/privacy-policy) for more information.
14 Jun 2023
Advocacy in rare disease: Crafting the public narrative
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 Ipsen
Hosted by Ausha. See ausha.co/privacy-policy (https://ausha.co/privacy-policy) for more information.
11 May 2023
Advocacy in rare disease: Surveying the landscape
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 moderator
Hosted by Ausha. See ausha.co/privacy-policy (https://ausha.co/privacy-policy) for more information.
Contact Life and Science
Guest appearances
Books guests
Based on episode analysis; this does not confirm that the show is currently accepting guests.
Host of Life and Science?
Claim your podcast to manage its listing and keep your show details accurate.
Pod Engine is an independent podcast discovery and analytics service and is not affiliated with or endorsed by this podcast. Artwork and show content belong to their owners. Full legal notice.
Explore this show Podcast research with Pod Engine
