Week in RARE

Join us in Kansas City, Missouri for the 2024 RARE Health Equity Forum and RARE Advocacy Summit! Registration for Week in RARE will open mid-May.

September 26, 2024 – September 28, 2024

A week of exciting events!

Global Genes is on the move — Week in RARE is moving to Kansas City, Missouri in 2024. Week in RARE combines the RARE Health Equity Forum and RARE Advocacy Summit, in addition to the RARE Champions of Hope awards ceremony and annual membership meetings for Global Advocacy Alliance and RARE Corporate Alliance. This is a unique opportunity to gather and engage rare disease advocates and leaders in the same space for conversation.

RARE Health Equity Forum

The RARE Health Equity Forum gathers stakeholders in the rare disease space to identify ways in which we can better serve marginalized populations within the rare disease community.

Over the past three years we have worked as a community to learn about, and discuss the biases, barriers and challenges that marginalized communities face within rare disease. We have recognized the need to work together to bring forward more meaningful approaches to tackling these challenges. This year, sessions will provide attendees with actionable tools and strategic insights to support underserved and/or underrepresented patients within their community.

RARE Advocacy Summit

Each year, Global Genes convenes one of the world’s largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners, and allies at the RARE Advocacy Summit.

This is an unparalleled opportunity to forge meaningful connections with others in the rare disease community for future collaboration. Sessions provide attendees with insights about the latest in rare disease innovations, best practices for advocating on an individual and organizational level, and actionable strategies they can take home and implement immediately to accelerate change. Join us for networking, learning and inspiration.

RARE Champions of Hope

Groundbreakers. Leaders. Advocates

The RARE Champions of Hope awards celebrate, honor and recognize those in the rare disease community who are raising the bar through their innovative approaches to research, programming and advocacy to create meaningful impact in the rare disease space. Awardees are beacons of hope in the rare disease community who lean in, take risks and lead collaborative efforts to positively impact the lives of rare disease patients, caregivers and families across the globe. The awards ceremony will take place during the RARE Advocacy Summit.

Membership & Advisory Meetings

Every year at the RARE Advocacy Summit, the members of the Global Advocacy Alliance and RARE Corporate Alliance meet to discuss what went well this year, and where progress needs to be made. If you are a member of either group, look for an email invitation from your Global Genes contact.

If you are not a member of either group yet, now is a great time to join to take advantage of the benefits of the alliance, and meet with fellow members at the Summit during the annual meeting.

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