Practical

Raregivers™ Emotional Journey Map Guidebook

One in ten families worldwide are living with uncured rare, chronic and complex diseases - many more are undiagnosed. Our community is global, reaching every remote corner of every country on earth.

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Practical

Alternate Funding Mechanisms in Rare Diseases

For decades, rare disease research has been caught between two worlds: public grants that are too short-term to sustain discovery, and private investment that sees too little market potential to engage. Thousands of promising ideas never leave the lab, not because they failed, but because the funding system did. This book is written to change that.

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Practical

SoIn for Society and Inclusivity #5

This new issue of SoIn was born out of this desire. It aims to give a voice to unique journeys, not to put them on a pedestal, but to see them live, act, create, love... just like everyone else.

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Practical

Well-Being in Rare Diseases

Living with a rare disease is not only a medical experience—it is a human one. It reaches into every part of life: the body that struggles, the mind that questions, the family that hopes, and the community that rallies. This book began with that truth and has followed it through the many ways people find comfort, meaning, and strength when medicine alone is not enough.

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Practical

From Giving to Impact: Venture Philanthropy

Venture philanthropy is giving that works. It’s bold, structured, and built to solve real problems—not just fund them. Venture philanthropy (VP) offers a different path. It combines the heart of philanthropy with the tools of business.

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Practical

SoIn for Society and Inclusivity #4

The year 2025 marks a major milestone. It has been twenty years since the law on equal rights and opportunities, participation, and citizenship for people with disabilities laid a fundamental framework for our society. Twenty years of struggles, progress, achievements — and of ongoing challenges. Twenty years of a promise: the promise of a truly inclusive society, where everyone has a place, where difference is no longer an obstacle but a strength.

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Practical

La Dépression. Savoir quand demander de l’aide

This book is adapted from Older Adults and Depression. Knowing When to Get Help, from the National Institute of Aging at NIH. The information it contains is based on medical research. It will help you learn more about depression. There are also tips and practical information sheets to help you recognize and treat it.

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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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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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Practical

A Race against time

Making medicines is complex and, requires meticulous research, innovative thinking, and unwavering dedication. In the realm of rare diseases, this journey is even more complex because the illnesses are so rare.

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Practical

SoIn for Society and Inclusivity #1

At the heart of our society lies a treasure often overlooked: diversity. In this inaugural issue of So In, we delve into the essence of this wealth, exploring the many facets of inclusion.

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