Life and Science

Jul 20 2023 34 ep. 60 mins 5

Life and Science Podcast artwork

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 by Ausha. See ausha.co/privacy-policy for more information.

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Advocacy in rare disease: Closing the funding gap

Jul 20 2023 55 mins

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 sh

Advocacy in rare disease: Crafting the public narrative

Jun 14 2023 56 mins

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

Advocacy in rare disease: Surveying the landscape

May 11 2023 57 mins

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

Humanizing the support of patients living with a Rare Disease

Nov 15 2022 57 mins

"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 c

The urgent need to internationalize databases for rare disease patients

Oct 03 2022 60 mins

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 d

Doing better where it counts: Bringing rare disease care to underserved populations

Aug 29 2022 60 mins

We are on the brink of new solutions that include accessing specialized care through telemedicine, diagnosis through mail-in specimens, and computer-aided remote phenotyping. This webinar discusses how new systems and technologies can close the chasm that prohibits those with rare diseases living in underserved countries and communities from getting critically needed care. ht

Where hope knocks: Personalized therapies in rare disease

Jul 07 2022 58 mins

New drug design methodologies allow us to contemplate designer medicines for very small groups of patients or even individuals. The future holds promise for the rare disease community because modern biotech can build bespoke (customized) therapies. Are we at the dawn of personalized treatments being widely available for individual patients? This poses a broader question: Just

Combating the fragmentation of data and disciplines: Innovation hubs to address rare diseases

May 30 2022 60 mins

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

Reimagining rare disease detection: Who needs to be at the table?

Apr 15 2022 58 mins

Rare disease detection is an interdisciplinary and international problem. Building a solution must include internationally agreed-upon diagnostic criteria for each rare disease, patient access to diagnostic technologies, and effective communication strategies between health care workers and patients. In addition, relevant medical databases (e.g., patient DNA data) need to be i

Uniquely singular: Exploring what it means to be rare

Nov 19 2021 60 mins

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 critic