Media

Vidéo

Inside Lymphaletics with Rafa

Meet Rafa, a teenager living with lymphedema, and discover how his personal experiences inspired him to film Lymphaletics, bringing young people together through sport while sharing his hopes for better treatments and, one day, a cure.

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Vidéo

Toni – Turning Pain into Purpose

Meet Toni Roberts, a young advocate from South Africa living with epidermolysis bullosa, and discover how her personal experiences inspire her to raise awareness and amplify the voices of people living with rare diseases.

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Vidéo

Ida – Beyond Stigma

Discover Ida’s story, from growing up alongside her brother Karlo, who lives with a rare disease, to becoming a passionate advocate for inclusion, dignity, and equitable healthcare.

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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 an adapted van for people with disabilities and their caregivers,…

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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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