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 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 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,
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 for more information.