The Boston Globe's Rare Disease Summit Connects Industry Leaders & Community Advocates

Registration now available for Rare Disease Summit on Tuesday, February 25

BOSTON, Feb. 13, 2025 /PRNewswire/ -- Health industry leaders and advocates come together for The Boston Globe's Rare Disease Summit, featuring powerful conversations with the rare disease community on Tuesday, February 25, 2025 from 10 a.m. to 3 p.m. ET at Big Night Live in downtown Boston.

Attendees, both in person and virtual, will learn how companies are driving medical breakthroughs to tackle rare diseases and help patients and families. The Globe's Rare Disease Summit offers participants the opportunity to connect with experts and innovators focused on driving meaningful change in the rare disease space.

"We are committed to supporting the rare disease community and look forward to our first Rare Disease Summit where we will connect experts and advocates; learn about the latest innovations and research; and share inspiring stories of hope and progress," said Erika Hale, vice president of events and sponsorships at Boston Globe Media.

Anna Kuchment, Globe health and medical editor, is participating in the event with additional Globe journalists including Jonathan Saltzman, biotech and life sciences reporter; Naomi Martin, assistant business editor; and Kara Baskin, Globe guest contributor and writer of the award-winning Parenting Unfiltered newsletter and column is also participating.

Pamela Gavin, CEO of the National Organization for Rare Disorders (NORD), will be the featured keynote speaker for the event, kicking off programming that will include informative sessions on breakthroughs in rare cancer treatment, advancements in gene therapy, and the latest research on supporting children with rare diseases. Additional speakers include Kristen DeAndrade, the founder of The Little Legs Big Heart Foundation, and Timothy Yu, MD, PhD, Attending Physician, Division of Genetics and Genomics, Boston Children's Hospital.

The Summit features nonprofit partners including Boston Children's, NORD, The Little Legs Big Heart Foundation, and The Pathway Initiative.

Alexion is the presenting sponsor for the event, and supporting sponsors include BioMarin, Sarepta Therapeutics, Takeda, and Havas Life Rare.

Virtual Attendance is free and in-person tickets, including a complimentary lunch, are $150. Use promo code "PR50" for 50 percent off in person ticket purchases.

The schedule of programming includes:

• 10:00 AM: Fireside Chat with Pamela Gavin of NORD
• 10:35 AM: From Bench to Bedside: Rare Cancer Innovations
• 11:05 AM: Changing the Course of the Rare Disease Diagnostic Odyssey, Sponsored by Alexion
• 11:35 AM: Pioneering Breakthroughs in Gene Therapy
• 12:00 PM: Complimentary Lunch and Networking, Sponsored by Sarepta
• 1:05 PM: Making Space for Tough Conversations in Achondroplasia, Sponsored by BioMarin
• 1:35 PM: Extraordinary Journeys: Children and Rare Diseases
• 2:05 PM: Networking and Nonprofit Partners Reception Sponsored by Takeda

Visit Globe.com/raredisease to learn more, or email [email protected]. Use PR50 for 50 percent off in person ticket purchases.

Contact: Carla Kath, Director of Communications, [email protected]

About Boston Globe Media:

Boston Globe Media Partners, LLC is a locally owned, award-winning media company serving Boston and New England for over 152 years. The cornerstone of the brand is The Boston Globe, a 27-time Pulitzer Prize-winning news source and one of the most successful metro news organizations in the United States. The Globe is headquartered in Boston with regional bureaus in Washington, D.C., Rhode Island, and New Hampshire. The Globe has been successfully growing its direct subscriber base, today boasting the highest total number of subscribers the organization has had since 2008. The Globe hosts events that connect community members to its journalism and provides a range of digital and home-delivered advertising solutions that reach more consumers than any other New England media brand. Boston Globe Media's portfolio includes The Boston Globe, Globe.com, Boston.com, STAT, The B-Side, Globe Publishing Services, Globe Events, Studio/B, Boston magazine, and the weekday news program Boston Globe Today on NESN and online.

SOURCE Boston Globe Media