Media

Vidéo

Claude Revert: Still Standing

“The marathon is a fight, just like my life — it’s my way of showing that I exist.” — Claude Revert Born with Hirschsprung’s disease, abandoned at birth, and long destined for immobility, Claude Revert chose running as his way to fight, to live, and to bear witness.

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Vidéo

Yamina’s Life attends our webinar

🎬 For the webinar “Redefining Connection: How young people are shaping the future of the rare disease community through technology and innovation,” organized with Science, @YaminaHsaini, content creator and advocate for patients with rare diseases, shares her story. 🗣️ “This was an unforgettable experience! It…

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Webinar

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 are creating spaces for shared experiences, resources, scientific advancement, and advocacy that transcend geographical and generational barriers.

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Webinar

Unlocking Healthcare Access for Rare Disease

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 panel discussion we will explore strategies for overcoming obstacles to access by hearing…

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Vidéo

Little Issue: Young Minds Matter

🌟 𝗬𝗼𝘂𝗻𝗴 𝗠𝗶𝗻𝗱𝘀 𝗠𝗮𝘁𝘁𝗲𝗿: Discover how Little Issue…

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Vidéo

Rare Care: how new medicines are made

 🔬 Developing and funding treatments for rare diseases present distinct challenges that traditional funding models often can’t address. With small patient populations, high research costs, and limited commercial incentives, innovation for rare disease requires new approaches. 🙌 Filmed at…

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Vidéo

Behind the scene of “Je suis autiste… et alors?”

 📚 Go behind the scenes of the book “I’m Autistic… So What?” 👉A powerful and uplifting testimony about autism, available for free in both digital and print versions. 🎙️ At just 26 years old, Maxime Vindrier has established himself…

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Vidéo

A Conversation with Teri Wiley, Managing Director at Pathways to Cures

At LaunchBio’s Invest in Cures Event in San Diego, Teri Wiley, Partners, Managing Director at Pathways to Cures shared important insights on venture philanthropy in the context of bleeding disorders.  …

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Vidéo

Understanding gene therapy for rare diseases

During our conversation with Dr. Stephanie Cherqui at the Invest in Cures event by LaunchBio, we explored the transformative impact of gene therapy in treating genetic disorders, especially rare diseases. Meet Dr. Stephanie Cherqui Dr. Cherqui is a professor at the University of…

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Webinar

Keys to success: Unlocking health care access for rare disease

This webinar aims to share insights, experiences, and best practices in navigating the complexities of health care systems to ensure equitable access for rare disease patients

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Webinar

Standing out in the storm: Caregiving in rare disease

This webinar aims to provide caregivers with valuable knowledge and strategies to navigate the complexities of caregiving in the context of rare diseases.

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Webinar

Blooming against odds: Successfully navigating mental health in rare disease

The discussion aims to empower individuals with rare diseases to not only survive but thrive in their journey towards mental health and well-being.

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