Global Genes

Global Genes Empowering the Next Generation Rare Disease Advocate. Merged with RARE-X Dec. 2022. Hope. It’s in our genes.™

⏰ LAST CALL! Registration for the RARE Drug Development Symposium closes September 2nd! 🚨Head to Boston (Sept 9–11) to c...
08/31/2026

⏰ LAST CALL! Registration for the RARE Drug Development Symposium closes September 2nd! 🚨

Head to Boston (Sept 9–11) to connect with advocates, researchers, and biotech leaders working to push rare disease research forward.

✨ What to expect:
• Mainstage sessions & expert office hours
• Hands-on research workshops
• Direct pitch sessions with industry partners

Spots are filling fast—register before doors close on Sept 2nd!

🔗 Click the link in our bio to secure your ticket!

Can’t travel to RDDS? We’ve got you covered! 💻✨You can still be part of the RARE Drug Development Symposium from anywher...
08/26/2026

Can’t travel to RDDS? We’ve got you covered! 💻✨

You can still be part of the RARE Drug Development Symposium from anywhere in the world. Join us virtually from September 9 – 11, 2026 to access key sessions, groundbreaking insights, and powerful advocacy discussions.

Your Virtual Access Pass includes:
🔥 2 Fireside Chats
💬 6 General Sessions
🌟 Keynote Talks
⚡ Pitch Perfect Session

Don't miss out on connecting with the global community of advocates powering research.

🔗 https://globalgenes.org/rare-drug-development-symposium-2025/rare-drug-development-symposium-live-stream-2026/

What does it take to build a rare disease funding model that actually scales?Under Michael Hund’s leadership, transform...
08/25/2026

What does it take to build a rare disease funding model that actually scales?

Under Michael Hund’s leadership, transformed the clinical landscape for epidermolysis bullosa from just TWO active trials to over FIFTY - delivering 3 FDA-approved therapies where none existed. Proof that venture philanthropy works.

Now, through Rare Ventures, Michael is bringing that blueprint to the entire rare disease community. By combining AI, patient data, translational science, and sustainable business models, this platform is built to support hundreds of rare conditions.

We’re honored to welcome Michael Hund, M.B.A. (CEO of EBRP & Co-Founder of Rare Ventures) as a Featured Keynote Speaker at the RARE Drug Development Symposium!

🎙 Keynote: Venture Philanthropy Redefined: Building Scalable, Sustainable Models for Rare Diseases

Tap the link in our bio to grab your spot! 🎟️

Got big questions about your drug development strategy? Let’s get you answers. 🧬✨At this year’s RARE Drug Development Sy...
08/19/2026

Got big questions about your drug development strategy? Let’s get you answers. 🧬✨

At this year’s RARE Drug Development Symposium (RDDS), registered attendees get access to Expert Office Hours | 15-minute 1:1 sessions with top leaders in the field!

Whether you need tailored advice on:
🔬 Data collection & biorepositories
📈 Research strategy
📊 Clinical trial readiness
..this is your chance to get direct feedback on your most pressing challenges.

🚨 Important Info: Space is limited! To ensure all attendees have an opportunity to connect with an expert, bookings are limited to 1 session per day per attendee. You must be registered for RDDS to book.

🔗 Head to the link in our bio to register now and reserve your 1:1 slot!

👇 Tag a researcher or advocate who needs to know about this!




Rare disease drug development moves faster - and smarter - when guided by those who live with these conditions every day...
08/13/2026

Rare disease drug development moves faster - and smarter - when guided by those who live with these conditions every day. 🧬✨

Yet, patient engagement is still too often treated as a consultation rather than a true strategic partnership.

At this year’s RARE Drug Development Symposium, Session 6 is tackling this head-on.

Swipe ➡️ to see what we’re covering in Reimagining Industry–Advocacy Collaboration in Drug Development:

1️⃣ Moving from "checking the box" to true co-creation
2️⃣ Concrete steps to build community trial readiness
3️⃣ Embedding patient insight directly into trial design from Day 1

Your voice belongs in the room where decisions are made. Let's build the future of drug development together. 🤝

🔗 Tap the link in our bio to register today!

FDA approval gets treatments across the finish line, but how do we get them to the patients who need them most? 🧬💊Access...
08/12/2026

FDA approval gets treatments across the finish line, but how do we get them to the patients who need them most? 🧬💊

Access and affordability can’t be an afterthought. Join us at the RARE Drug Development Symposium for Session 5: Market Access for Rare and Ultrarare Communities!

Learn how advocacy groups, biopharma, and healthcare leaders can collaborate early to build compelling evidence that secures reimbursement and drives real patient access.

🔗 Tap the link in our bio to register today!

ONE MONTH AWAY and spots are almost gone! ⏳🚨The countdown to the 10th Annual RARE Drug Development Symposium in Boston i...
08/10/2026

ONE MONTH AWAY and spots are almost gone! ⏳🚨

The countdown to the 10th Annual RARE Drug Development Symposium in Boston is officially on. Registration is filling up fast, and you must sign up NOW or risk losing your spot!

Why you need to be in the room:
✨ Watch live advocacy Pitch Sessions to biopharma & investors
✨ Book 1-on-1 consultations with top drug development experts
✨ Find lab, CRO, and manufacturing partners in The Catalyst Zone
✨ Translate lived experiences into clinical trial readiness Don't miss the premier event aligning advocates, science, and industry.

Lock in your ticket before we sell out! 🎟️
🔗 Tap the link in our bio to register immediately!

Behind every rare disease drug approval - and every trial setback - is a lesson that can change the future of research. ...
08/06/2026

Behind every rare disease drug approval - and every trial setback - is a lesson that can change the future of research. 💡

On Sept. 10th at 8:45 AM ET, join Global Genes for Session 3 of the RARE Drug Development Symposium as we dive into real-world case studies from recent rare disease trials and approvals.

What to expect:
✨ Practical takeaways on clinical trial design & outcome measures
✨ Key advocacy strategies that drove program success
✨ Honest lessons from both breakthroughs and disappointments

👉 Tap the link in our bio to register today!

Meet the game-changers pitching at the RARE Drug Development Symposium on Friday, Sept 11th! 📣🏆Our Breakout Tracks are f...
08/05/2026

Meet the game-changers pitching at the RARE Drug Development Symposium on Friday, Sept 11th! 📣🏆

Our Breakout Tracks are featuring these incredible patient advocacy organizations. They're showcasing real-world strategies for accelerating therapies and attracting industry investment. They’ll be pitching live to our expert judges from BioPharma, Academia, and Venture Capital. 💡🙌

We are thrilled to announce our Breakout Pitch Advocates:

🧠 Neurodevelopmental Disorders & Epilepsy
✨ CTNNB1 Foundation - Špela Miroševič, Co-Founder & President
✨ International SCN8A Alliance - Gabby Conecker, Executive Director & Co-Founder

👁️ Adult Neurologic & Vision-Related Disorders
✨ Hereditary Neuropathy Foundation - Matt Jarpe, Scientific Consultant
✨ Usher Syndrome Coalition - Krista Vasi, Executive Director

🧬 Immune & Connective Tissue Function
✨ The Ehlers Danlos Society - Briony Corbet, Senior Partnerships Coordinator
✨ Myositis International Health & Research Collaborative Alliance - Lesley Ann Saketkoo, Board of Directors

Don’t miss this chance to learn and connect with these innovative leaders.

🔗 Click the link in our bio to register!

From ultra-rare conditions to individual N-of-1 therapies, the landscape of precision medicine is shifting rapidly. But ...
08/04/2026

From ultra-rare conditions to individual N-of-1 therapies, the landscape of precision medicine is shifting rapidly. But how do we scale these individualized treatments so every patient gets access? 🤔💊

Join Charlene Son Rigby ( / STXBP1 mom) and Tim Yu () for an insightful Closing Fireside Chat at the upcoming RARE Drug Development Symposium! ⚡️

Together, we’ll explore how regulatory frameworks, community strength, and science intersect to shape the future of rare disease therapies. 👥💙

👉 Tap the link in our bio to register today!

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