Rare diseases affect over 300 million people worldwide, with many more families and caregivers impacted by these conditions. In the United States alone, there are over 7,000 known rare diseases, many of which have no treatment or cure.

Despite these challenges, there is hope and support available for individuals and families affected by rare diseases. The National Organization for Rare Disorders (NORD) and the RYR-1 Foundation are two organizations dedicated to organising Rare Disease Community and providing resources, advocacy, and community to those impacted by rare diseases.

This year, NORD and the RYR-1 Foundation are hosting several events to support the rare disease community. These events offer opportunities for individuals and families to connect with others who share similar experiences, learn about the latest research and treatments, and advocate for policy changes that benefit the rare disease community.

RYR-1 Foundation’s 2025 Family Conference For Rare Disease Community

The RYR-1 Foundation’s 2025 Family Conference is a highly anticipated event that will take place on  July 24 – 27, 2025 in Pittsburgh, PA, USA.. This conference is specifically designed for individuals and families affected by RYR-1-related disorders, including malignant hyperthermia, central core disease, and multi-minicore disease.

The conference will feature a range of sessions and activities, including:

• Keynote presentations by leading researchers and clinicians in the field of RYR-1-related disorders
• Panel discussions and Q&A sessions with experts and individuals affected by RYR-1-related disorders
• Workshops and breakout sessions on topics such as disease management, advocacy, and research updates
• Networking opportunities and social events for individuals and families to connect with others who share similar experiences

NORD’s Rare Disease Summit For Rare Disease Community

NORD’s Rare Disease Summit is an annual event that brings together individuals and families affected by rare diseases, researchers, clinicians, industry representatives, and policymakers to discuss the latest developments and challenges in the rare disease community.

This year’s summit will take place on October 20-21, 2025, in Washington, D.C. The event will feature:

• Keynote presentations by leading researchers, clinicians, and policymakers in the rare disease field
• Panel discussions and Q&A sessions on topics such as rare disease research, diagnosis, treatment, and advocacy
• Workshops and breakout sessions on topics such as patient engagement, rare disease policy, and industry partnerships
• Networking opportunities and social events for individuals and families to connect with others who share similar experiences

Why Attend These Events?

Attending the RYR-1 Foundation’s 2025 Family Conference and NORD’s Rare Disease Summit can be a life-changing experience for individuals and families affected by rare diseases. These events offer:

• Opportunities to connect with others who share similar experiences and challenges
• Access to the latest research and treatment updates from leading experts in the field
• A platform to advocate for policy changes and raise awareness about rare diseases
• A sense of community and belonging among individuals and families who often feel isolated or misunderstood

Registration and Accommodations For Rare Disease Community Events

Registration for the RYR-1 Foundation’s 2025 Family Conference and NORD’s Rare Disease Summit is now open. To register, please visit the RYR-1 Foundation’s website or NORD’s website.

A limited number of scholarships and travel grants are available for individuals and families who may need financial assistance to attend these events. To apply, please contact the RYR-1 Foundation or NORD directly.

The RYR-1 Foundation’s 2025 Family Conference and NORD’s Rare Disease Summit are two events that you won’t want to miss if you’re part of the rare disease community. These events offer opportunities to connect with others, learn about the latest research and treatments, and advocate for policy changes that benefit the rare disease community.

Don’t miss out on these empowering events. Register today and join the rare disease community in advocating for a brighter future for all individuals and families affected by rare diseases.