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Update frequency:
every 52 days
Average audio length:
61 minutes
English
United States
34 episodes
since Oct. 7, 2020
episodic

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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 a…

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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 dise…
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 org…
"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 c…
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…
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 livi…
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 …
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 prioritiz…
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 pat…
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 suffe…
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