Books

Spotlight

Children

La Super Famille de Pauline, la lapine

Pauline, a little rabbit with a rare disease, lives with her big sister Capucine and their parents. There's a legend in the forest that they're real heroes.

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Practical

SoIn for Society and Inclusivity #3

Teaching, sharing, learning to see differently: by making disability an educational resource, we can transform mindsets. Our differences, far from being obstacles, are challenges for collective creativity.

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Science

The Rare Disease Gazette #24

In this edition, Erika Berg, PhD, hosts a conversation about Keys to success: Unlocking health care access for rare disease.

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Comics, Mangas

Autiste… et alors ?

Maxime Vindrier, 26, is a passionate and talented illustrator. Diagnosed as autistic, he speaks about his condition with authenticity and humor in his book Autistic... So What? where he demystifies his daily life with a light and accessible tone.

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Biographies

Recueil de nouvelles. Histoires de vie avec la SLA

Through this collection of short stories, ARSLA not only provides a platform for voices that dare to confront this reality but also pays tribute to the resilience and humanity that endure despite the pain.

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Science

The Rare Disease Gazette #23

In this edition, Erika Berg, PhD, hosts a conversation about Standing out in the storm: Caregiving in rare disease

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Poetry

Rare Visions

This free poetry book collects poems about patients living with a rare disease. This book was written by Roopa Ramamoorthi, a scientist and a poet.

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Science

The Rare Disease Gazette #22

In this edition, Erika Berg, PhD, hosts a conversation about Blooming against odds: Successfully navigating mental health in rare disease.

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Science

Living with a Rare Disease Worldwide. Volume 3

This free book, made in collaboration with the National Press Foundation, gathers press articles on people living with a rare disease accross the globe.

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Practical

Entrepreneurs have the DACMAR Advantage

DACMAR is a FAST BUSINESS GUIDE for newbie biotech entrepreneurs. GIVE ME 5 MINUTES: If you know nothing about modern biotech business lingo, grab this book and read the LEARNING BOXES.

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Practical

SoIn for Society and Inclusivity #2

As we prepare for the grand event of Paris 2024, our journal will focus on sports to support this event that will transform our daily lives while bringing joy, passion, and emotion. But beyond the results, it is the stakes of the Games that challenge us.

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Science

Uncovering Rare Disease. Volume 3

Science (American Association for the Advancement of Science) magazine, in collaboration with Fondation Ipsen, offers international scientific webinars for the general public. In 2023, these webinars focused on advocacy in rare diseases.

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Biographies

Paroles d’aidants

Supported by the associations Âges et Vie 94 and Delta 7, Paroles d'aidants brings together the moving testimonies of those who dedicate their lives to supporting their loved ones in situations of dependency.

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