We shed light on rare diseases to accelerate diagnosis

Science (American Association for the Advancement of Science) magazine, in collaboration with Fondation Ipsen, offers international scientific webinars for the general public. This special edition book compiles all of the conversations from the 2024 webinars, which are reproduced in The Rare Disease Gazette.

In this edition, Erika Berg, PhD, hosts a conversation about Workplace wins: Finding a fulfilling career and overcoming stigma in rare disease.

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.

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.

Weston loves being in the action. As the goalie for his traveling soccer team, he’s often running for a save. When he’s not on the field, he might be biking, rock climbing or playing basketball. But for Weston, an injury such as from a fall or a collision could be dangerous.

In this edition, Erika Berg, PhD, hosts a conversation about Bright breakthroughs: Real stories of beating rare disease.

Evie is creative, curious and smart. So why is it difficult for her to focus on homework, keep track of things and even finish setting the table? Evie has ADHD, which stands for attention-deficit/hyperactivity disorder.

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.