Events | CDG Hub

February 2026

February 23, 2026

FDA Rare Disease Day 2026

Virtual

The FDA will host Rare Disease Day, a virtual public meeting, on Monday, February 23, 2026, from 9 am to 4 pm EST. The theme is: “Moving Forward. Looking Ahead. An Event for Patients.” The goal of this year’s Rare Disease Day is to explore ways to engage and collaborate with patients and their communities to support and accelerate the development of medical products for rare diseases.

February 27, 2026 / Bethesda, MD

Rare Disease Day at NIH 2026

NIH Main Campus (Natcher Conference Center) / 9000 Rockville Pike Bethesda, MD 20892

Sponsored by the National Center for Advancing Translational Sciences (NCATS) Rare Disease Day at NIH 2026 will be held in-person at the NIH Main Campus (Natcher Conference Center) and livestreamed via NIH VideoCast. The event agenda will feature panel discussions, rare diseases stories, in-person exhibitors and scientific posters, and an art exhibition. The event is free and open to the public.

February 27, 2026

CORD Rare Disease Day 2026 Webinar

Live Webinar

This Rare Disease Day, join CORD for a 1-hour webinarmarking the first 1.5 years of Canada’s Rare Disease DrugStrategy (RDDS). The session celebrates progress in accelerated access while focusing on what comes next: demonstrating value.

April 2026

April 24-26, 2026 / Orlando, FL

CDG Scientific & Family Conference

Hilton Orlando Lake Buena Vista - Disney Springs Area / 751 Hotel Plaza Blvd, Lake Buena Vista, FL 32830, United States

The CDG Scientific & Family Conference is a unique opportunity to engage in cutting-edge research updates, meaningful conversations, and community-driven collaboration. Whether you're a family member, advocate, or professional, this event offers the chance to learn from one another, build lasting connections, and help shape the future of CDG research and care. This year’s conference offers a full schedule of engaging, cross-disciplinary programming designed to foster collaboration, spark new ideas, and highlight progress across all CDG types. Each day’s programming will feature a dynamic blend of scientific presentations, clinical discussions, and community-focused sessions that elevate the patient voice, highlight scientific discoveries, and center the priorities of our global CDG community.

August 2026

August 25-28, 2026 / Helsinki, Finland

2026 SSIEM Symposium: Next Generation Metabolic Medicine

Messukeskus Helsinki Exhibition and Conference Centre

This year’s theme, Next Generation Metabolic Medicine will be focused on where research in the field is heading and how today’s science shapes tomorrow’s practice. Alongside the scientific program, the exhibition will feature leading companies, patient advocacy groups, and other organizations presenting their latest developments.