Global Genes and Boston Children's Hospital Team Up for 2025 RARE Symposium on Drug Development Excellence

Global Genes and Boston Children's Hospital Join Forces for the 2025 RARE Drug Development Symposium



In a groundbreaking initiative, Global Genes has announced a partnership with Boston Children's Hospital and other prominent organizations to host the 2025 RARE Drug Development Symposium (RDDS). Scheduled for 2025 and taking place in Boston, this symposium aims to empower patient advocates dedicated to rare diseases by equipping them with essential knowledge and tools necessary for driving research and therapeutic developments.

A Transformative Experience for Rare Disease Advocates


This symposium will unfold over 1.5 days and is designed as an immersive experience for advocates, researchers, and life science partners. Participants can expect hands-on learning and collaboration aimed at accelerating drug development for rare diseases, often overlooked in mainstream medical research.

Charlene Son Rigby, CEO of Global Genes, emphasizes that the role of rare disease advocates has never been more critical. "Rare disease patient advocates are driving drug development efforts like never before, and they need access to tools and training that match their urgency and ambition," she stated. The event promises to be a transformative experience, enhancing advocates’ ability to translate their personal experiences into actionable research insights that can benefit their communities.

Engaging Learning Opportunities


The RDDS is structured to provide a comprehensive overview of the drug development process. Attendees can look forward to a rich program consisting of keynote speeches, breakout sessions tailored to specific topics, and opportunities for expert mentorship through office hours and live coaching seminars. The focus will be to help advocates build robust research portfolios that address critical needs in their specific fields.

Among the many learning objectives, participants will:
  • - Align therapeutic strategies with disease biologies, enabling informed research decisions.
  • - Employ natural history studies, biomarkers, and patient-reported outcomes to foster clinical advancements.
  • - Develop compelling research narratives to attract investments and collaborations.
  • - Engage proactively in clinical research, ensuring readiness and patient-centered approaches from the outset.

The symposium also features an impressive lineup of confirmed speakers, including esteemed researchers and advocates like Dr. Wendy Chung and Dr. Tim Yu. Their insights are expected to highlight the evolving role of patient engagement in therapeutic development.

A Highlighting Collaboration with RARE-X


Integral to the event's mission is the RARE-X program, a platform introduced by Global Genes that facilitates patient-driven data collection. This initiative aims to create a vast, collaborative database purposed to enhance research opportunities in rare diseases globally. The success of previous symposiums reflects the increasing demand for such initiatives; 94% of past attendees reported gains in their knowledge regarding drug development processes, while 97% made valuable connections to expedite their work.

The Road Ahead


"RDDS is not just another conference; it’s a catalyst for rare disease advocates who are ready to lead and build vibrant ecosystems for progress," Rigby remarks. The symposium encourages both novice researchers and experienced advocates to explore new collaborations, maximizing their impact within the rare disease landscape.

As the RDDS approaches, anticipation builds around the enriched dialogue and innovative collaborations it will foster. Participants can consider it a unique opportunity to gain clarity, expand their professional networks, and enhance their confidence as they pursue critical research initiatives. The success of this event will undoubtedly lay the groundwork for the future of rare disease research and advocacy.

Acknowledgments


The symposium’s success is bolstered by generous sponsorship from leading organizations in healthcare, including Amgen Rare Disease, Alexion Charitable Foundation, and others, dedicated to driving innovation in the rare disease space. For more information or to register for the 2025 RARE Drug Development Symposium, visit Global Genes.

Topics Health)

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