Spotlight

Science

Rare Diseases, from A to Z. Volume 2

26 letters, 26 rare diseases, 26 artworks : this alphabet book is an invitation for openness and for more recognition of rare diseases in our society. By putting words and images to these conditions, we contribute to breaking the isolation of patients and raising collective awareness.

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Science

Advancing Inclusion

Featuring a comprehensive framework for sustainable change, it equips scientific leaders, educators, leaders, and policymakers with the tools to foster diversity, equity, and belonging in STEMM fields, creating opportunities for equitable advancement.

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Science

Venture Philantropy

This book is a translation of the NAS report on venture philanthropy. A must-read for those committed to reshaping medical research and delivering hope to millions through cutting-edge, actionable solutions.

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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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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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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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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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Science

The Rare Disease Gazette #21

In this edition, Erika Berg, PhD, hosts a conversation about advocacy in rare disease: Driving Advances in Technology.

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Science

Les Fentes de A à Z

A digital dictionary has been developed by the Center of Reference for Clefts and Facial Malformations (MAFACE).

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Science

The Rare Disease Gazette #19

In this edition, Erika Berg, PhD, hosts a conversation about advocacy in rare disease: Taking care of caregivers.

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Science

The Rare Disease Gazette #18

In this edition, Erika Berg, PhD, hosts a conversation about advocacy in rare disease: Working the regulatory angle.

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