Media

Vidéo

Van pour tous : voyage vers l’accessibilité

 ♿️ When her brother was diagnosed with ALS, Tiffany refused to give up on one essential thing: the right to travel. 🚐 That’s how Van pour tous was born — a project to create…

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Vidéo

UNPLUGGED. Disconnect the noise. Reconnect with Science.

   🔌 UNPLUGGED. Disconnect the Noise. Reconnect with Science. 💭 Between misconceptions, misinformation, and confusion, it can be hard to separate fact from fiction. 🙌 Fondation Ipsen and Fondation…

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Vidéo

Rare Disease Day 2026

   📽️ To mark International Rare Disease Day 2026, we have partnered with the AnDDI-Rares healthcare network on a collaborative art project led by artists Lucie Albon and Matthieu…

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Vidéo

Claude Revert: Être Debout

  🏃‍♂️ “The marathon is a fight, just like my life — it’s my way of showing that I exist.” 🌟 Born with Hirschsprung’s disease, abandoned at birth, and destined for immobility, Claude Revert chose to run, to exist, to bear witness. 👉 For…

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Vidéo

Funding Rare Disease Research

  Funding for rare disease research has traditionally been led by government agencies like the NIH, but there are increasing opportunities for a wide variety of funding mechanisms to play a role in advancing research and therapeutic development. This panel will explore the diverse ecosystem of funders…

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Vidéo

Les Enfants de la Génétique: des livres doux pour les enfants

   🌟 Meet Sonia Goerger, author, and Élodie Garcia, illustrator, as they discuss their book collection, Children of Genetics 📚✨ Sweet stories that address rare diseases and disabilities from a child’s perspective, helping families feel less alone, raising public…

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Vidéo

Navigating Mental Health in Rare Disease

   Living with a rare disease can be an isolating experience, with impacts on both physical and mental well-being. Yet, the global community of those affected is vast, numbering…

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Vidéo

Caregiving in Rare Disease

   Whoever came up with the expression “Not all heroes wear capes” probably had a caregiver in mind. Caring for someone with a rare disease comes with a maelstrom of challenges, often requiring a multifaceted approach that addresses medical,…

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Vidéo

Unlocking Healthcare Access for Rare Diseases

   🤔 Health care access is a global challenge, compounded for rare diseases in which diagnostic and treatment options may be both geographically and financially out of reach for many patients. 🔑 Yet access is attainable, and in this…

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Vidéo

How Are Young People Shaping the Future of the Rare Disease Community?

   💡In the age of digital connection, young people are building vibrant, supportive rare disease communities in ways that previous generations may not immediately recognize. 🧑‍💻 Utilizing technology, social media, and innovative approaches, they…

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Vidéo

Real Stories of Beating Rare Disease

   What is the ultimate example of a win in rare disease? A cure. While a lot of attention has been focused on emerging cell and gene therapies, there are other promising roads to a cure as well, such…

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Vidéo

Bridging Silos in Rare Disease Research Communities

   Discover our webinar series on rare disease with Science AAAS! 🧬 In the realm of rare disease research, collaboration across disciplines, organization types, and disease types is essential to accelerating progress. 🔬Traditionally, scientists have focused on studying individual…

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