Global Genes

10/14/2026

🏔️ 19,000 feet. 200 miles. A 30-year fight for hope. 🚴‍♂️

What does it take to keep climbing when the road seems impossible?

Join us for the World Premiere of The Highest Road at the Newport Beach Film Festival! Directed by Allan Thompson, this feature documentary follows Kyle Bryant and Sean Baumstark—two men living with Friedreich's ataxia (FA)—as they bicycle 200 miles to the top of Umling La in India while tackling the complex fight for rare disease treatments.

"The mountain is a physical representation of what the rare disease community has been climbing for decades." — Kyle Bryant

📍Where: The Lido Theater | Newport Beach, CA
📅 When: Saturday, Oct 17 @ 12:00 PM

🔗 Watch the trailer & get details: https://thehighestroadfilm.com/

Kyle Bryant and Sean Baumstark, disabled by a rare disease, embark on a grueling 200-mile ride up Umling La, the world’s highest road. Supported by a

10/08/2026

The waiting is over! 🚨 Session recordings and presentation materials from the 2026 RARE Drug Development Symposium are NOW AVAILABLE on the Attendee Hub! 💻

Rewatch your favorite moments or catch up on what you missed across 3 days of powerful sessions, including:
🔹 7 General Sessions
🔹 Keynote & Pitch Presentations
🔹 Fireside Chats with Rare Leaders

With 371 attendees (in-person & virtual) representing 246 distinct rare diseases, proved that advocates truly power research. Over 85% of survey respondents said they left with actionable next steps for their research agenda—now you can dive back in to keep that momentum going!

Access the Attendee Hub for all recordings & downloadable slides! https://globalgenes.org/rdds-2026/rdds-2026-attendee-hub/

Thank you to our sponsors, speakers, and community for making this event unforgettable!

09/28/2026

Global Genes is proud to partner with the Termeer Institute to launch Leadership Lab, a day-long immersive experience for rare disease patient advocacy leaders.

Through interactive workshops, expert-led sessions, and real-world
scenarios, participants build the strategic relationship-building, negotiation, and communication skills needed to create lasting partnerships with researchers, industry partners, funders, and clinicians — and drive meaningful progress for their communities.

⭐ Key Topics Include:
Strategic Partnerships & Negotiation: Building Relationships that Create Impact
Leading Across Power Dynamics
Relationships that Change What’s Possible

Space is limited! Learn more and register today! https://globalgenes.org/rare-leadership-lab-2026/

09/16/2026

🌟 The 10th Annual RARE Drug Development Symposium wrapped up last week after 2.5 incredible days and the energy in the room said it all!

RDDS 2026 By the Numbers:
🎙️ 64 speakers
📋 6 general sessions
🔥 2 fireside chats
💡 13 interactive breakout sessions
🕐 Expert office hours for 1:1 guidance

From regulatory strategy to patient-centered trial design, this symposium reminded us why this work matters: every session, every conversation, every connection made here brings us closer to treatments for rare disease patients and families.

Thank you to every speaker, sponsor, and attendee who made these 2.5 days so impactful! We can’t wait for next year! 🧬

09/11/2026

🌟 Last day of is here!

We are ending RDDS on a high note with the can't miss Pitch Sessions! Eight Rare Disease Patient Organizations will have the opportunity to pitch to a panel of judges and get live feedback. Presentations will demonstrate how communities have built the scientific, clinical, and organizational assets needed to attract and sustain interest from biopharma and investors.

As we wrap up the 10th Annual RDDS, we want to thank our amazing sponsors who have made this event possible!

09/10/2026

⭐ Day 2 of is officially underway!

Can't join us in person? There is still time to register for the virtual live stream https://lnkd.in/gSRRJ6ZA

09/09/2026

A huge thank you to our amazing sponsors for making this years event possible!

09/09/2026

🌟 Day 1 of the 10th Annual RARE Drug Development Symposium kicks off today at 9:30am ET!

is all about empowering rare disease advocates with the tools, knowledge and connections to navigate rare disease research with confidence.

Can't join us in person? There is still time to register for the virtual live stream https://globalgenes.org/rdds-2026/rare-drug-development-symposium-live-stream-2026/

09/06/2026

The 10th Annual RARE Drug Development Symposium (RDDS) is only a few days away! Can’t make it in person to RDDS this year? You don’t have to miss out on the critical conversations driving rare disease research forward.

Join us virtually from September 9 – 11, 2026 and access high-impact sessions directly from your home or office.

What’s included in the Live Stream:
- 2 Fireside Chats
- 6 General Sessions
- Keynote Talks
- Pitch Perfect Session

👉 Register for the virtual access pass today: https://globalgenes.org/rdds-2026/rare-drug-development-symposium-live-stream-2026/

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!