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The Boston Globe's Rare Disease Summit: A Meeting of Minds

On February 25, 2025, the Boston Globe is set to host its inaugural Rare Disease Summit at Big Night Live in downtown Boston. This significant event aims to bridge the gap between health industry leaders and community advocates in the fight against rare diseases. With a focus on fostering collaboration and sharing invaluable insights, the summit promises to be a pivotal gathering for all involved.

An Important Platform for Change

The Rare Disease Summit will provide a unique platform for both in-person and virtual participants to engage in meaningful discussions about advancements in the treatment of rare diseases. Health industry innovators will showcase their latest breakthroughs and how these innovations can positively impact patients and their families.

Erika Hale, vice president of events and sponsorships at Boston Globe Media, emphasizes the commitment to the rare disease community: "We are dedicated to supporting this community and look forward to connecting experts and advocates, delving into the latest research, and sharing inspiring success stories."

Compelling Speakers and Topics

Scheduled to speak at the summit is Pamela Gavin, the CEO of the National Organization for Rare Disorders (NORD), who will deliver the keynote address. Gavin's insights will set the stage for a series of informative sessions covering vital topics such as breakthroughs in rare cancer treatments and the latest advancements in gene therapy. Additionally, the summit will feature discussions on how to support children facing rare diseases.

Attendees will also hear from notable figures including Kristen DeAndrade, founder of The Little Legs Big Heart Foundation, and Timothy Yu, MD, PhD, from Boston Children's Hospital. Their contributions will add depth to the summit's agenda, highlighting the personal and societal impacts of rare diseases.

A Day of Learning and Networking

The event's schedule is packed with compelling sessions designed to empower attendees with knowledge and resources. Highlights of the day include:

• - 10:00 AM - Fireside Chat with Pamela Gavin of NORD
• - 10:35 AM - Innovations in Rare Cancer Treatments
• - 11:05 AM - Navigating the Rare Disease Diagnostic Odyssey
• - 11:35 AM - Advances in Gene Therapy
• - 12:00 PM - Complimentary Lunch and Networking
• - 1:05 PM - Panel Discussion on Breakthroughs
• - 1:35 PM - Extraordinary Journeys of Children with Rare Diseases
• - 2:05 PM - Networking Reception with Nonprofit Partners

The event does come with a cost; in-person tickets are priced at $150, which includes lunch, while virtual attendance is free. Attendees can use the promotional code "PR50" to receive a 50% discount on in-person tickets.

The Role of Sponsors and Partners

Such a high-profile event could not be realized without the support of various sponsors and nonprofit partners. Alexion is the event's presenting sponsor, with notable contributions from BioMarin, Sarepta Therapeutics, Takeda, and Havas Life Rare, among others. Collaborative efforts from institutions like Boston Children’s Hospital and The Pathway Initiative are also pivotal in making this summit a reality.

The Boston Globe prides itself on serving the New England community for more than 152 years, and this summit highlights its commitment to journalism that informs and advocates for societal needs. The Rare Disease Summit exemplifies this integral mission by connecting those leading the charge in healthcare innovation with the heart of the community that benefits from these advancements.

To find out more about the Rare Disease Summit, visit Globe.com/raredisease or contact Carla Kath, Director of Communications. This summit is not just an event but a movement toward a brighter future for those impacted by rare diseases.