Global Genes

05/11/2026

🎧 RARECast is the weekly Global Genes podcast hosted by award-winning journalist Daniel Levine. It focuses on the intersection of rare diseases with business, science, and policy, and is supported by the members of the Global Genes Corporate Alliance.

April Episodes Included:
⭐ Špela Miroševič, Researcher, Co-Founder & President, CTNNB1 Foundation
⭐ Global Head, Rare and Neurologic Diseases Therapeutic Area at Sanofi, Pablo Sardi
⭐ Jim Foote, Co-founder and CEO, First Ascent Biomedical
⭐ Nicole Johnson, Executive Director of FOXG1 Research Foundation and Nasha Fitter, CEO of FOXG1 Research Foundation
⭐ Co-Founder, Chief Medical & Scientific Officer, MyOme, Akash Kumar

Listen to RARECast Here: https://globalgenes.org/podcasts/

05/10/2026

Happy Mother's Day to the caregivers who mother beyond measure💙

05/06/2026

We are thrilled to announce that registration is OPEN for the 2026 RARE Drug Development Symposium! 🎉 This premier event, hosted by Global Genes, is a critical gathering for anyone passionate about driving progress in rare disease treatments.

Join us from September 9-11, 2026, in the beautiful city of Boston, MA. Get ready for a dynamic lineup of speakers, workshops, and networking opportunities. It's the perfect environment for patient advocates, researchers, and industry leaders to come together and collaborate.

Spots fill up fast, so click the link in our bio to register today! 👇
https://globalgenes.org/rdds-2026/
We can't wait to see you there!

04/22/2026

We want to see YOU at the 2026 RARE Drug Development Symposium! 🗣️💡

Financial barriers shouldn't stand in the way of advocacy. We are thrilled to announce that applications for the Advocate Support Travel Stipend are officially OPEN!

This program is designed to help offset meeting and travel expenses, making it easier for our community leaders to join the conversation on rare disease innovation.

Who is eligible to apply?

🧬 Patients & Advocates: Individual patients and dedicated rare disease advocates.
👨‍👩‍👧‍👦 Support Systems: Close family and friends of advocates.
🤝 Organization Leaders: Paid or volunteer staff of rare disease nonprofits and support groups.
Your voice is essential to the future of drug development. Apply now to secure support for your journey!

https://globalgenes.tfaforms.net/f/rdds2026-advocatesupport

04/16/2026

🎧 RARECast is the weekly Global Genes podcast hosted by award-winning journalist Daniel Levine. It focuses on the intersection of rare disease with business, science, and policy, and is supported by the members of the Global Genes Corporate Alliance.

March Episodes Included:
⭐ Rachel McMinn, CEO of Neurogene
⭐ Hope for PDCD Founder and CEO, Frances Pimentel
⭐ Hematologist‑oncologist Marina Kremyanskaya and PV patient advocate Nona Baker
⭐ Theresa Strong, Director of Research Programs for the Foundation for Prader-Willi Research

Listen to RARECast Here: https://globalgenes.org/podcasts/

04/09/2026

Change is part of growth, and we’re stepping into an exciting new chapter 💙

Global Genes founder Nicole Boice is stepping down from her role as Chief Mission Officer and will continue her impact as an active member of the Board of Directors. Her leadership has helped build and unite the rare disease ecosystem, and her dedication to patients and advocates is deeply woven into the fabric of the rare community.

As we look ahead, under the continued leadership of CEO Charlene Son Rigby, Global Genes is entering its next phase of growth with a deepened commitment to eliminating the burdens faced by rare disease patients worldwide. With our 2025 strategic plan now in motion, we’re doubling down on empowering patient advocates with the tools, training, and trust they need to lead - fueling progress in research, community building, and therapeutic development.

The mission continues. 🚀

Continue Reading Press Release:

Global Genes, a leading patient advocacy nonprofit dedicated to the rare disease community, today announced that Nicole Boice, Founder and Chief Mission Officer, will be stepping down from her Chief Mission Officer role.

04/08/2026

🌍 11 New Voices, 1 Mission: The Global Advocacy Alliance is Growing!

We are thrilled to officially welcome 11 new members to the Global Advocacy Alliance! These leaders join us from across the globe, bringing unique expertise and a shared passion for driving next generation of rare disease breakthroughs.

🙏 A Massive Thank You to Our Sponsors. This program wouldn't be possible without the visionary support of our partners. Your commitment to advocacy and social impact empowers us to scale our reach and create lasting change.

Join us in the comments by welcoming our newest members!

04/02/2026

One Rare Experience is a free program for young adults (18-35) with rare conditions working towards fulfilling One Rare’s mission to improve experiences for this community through education, mentoring and peer support. Programming will focus on lifestyle and health, expression, art, and employment as well as free time to network, build social connections, and form friendships

The One Rare Experience will be held in Boston, MA July 29-August 1, 2026. Interested in possibly attending? Reach out to One Rare by filling out a brief survey at
https://lnkd.in/gg3QpMBN.

04/01/2026

Our Q1 newsletter just dropped! This edition highlights the start of a very busy 2026! Join us in Boston for the 10th RARE Drug Development Symposium. Meet the newest Global Advocacy Alliance Members, Corporate Alliance Members, as well as the RARE-X Class.

In addition, you’ll find stories from the rare community, partner news, Rare Resources, and highlights from Rare Disease Week. You won’t want to miss!

To view the full story, check your inbox or click below to view this issue and don’t forget to sign up to receive future newsletters!

Q1 Newsletter: https://email.globalgenes.org/global-genes-q1-recap-rare-programs-voices-resources
Newsletter Sign Up: https://tinyurl.com/GGConnect

-X

12/23/2025

HAPPY HOLIDAYS from all of us at Global Genes!

This year, our community has shown that resilience, compassion, and hope prevail even through the most unexpected and difficult challenges.

We look forward to connecting, empowering and inspiring the rare disease community in 2026 and are so grateful for your continued support.

Every donation enables Global Genes to give HOPE to the 400 million people worldwide affected by rare disease.

Give Today: https://globalgenes.org/donate-now/