Events

Rare Across America 2024 is the opportunity to meet with your Members of Congress at their in-district offices and educate them on the issues that are most important to the rare community by sharing your story. Where? All Senate meetings will be scheduled virtually and House meetings will be in person at your Member’s in-state, in-district office. Rare Disease Legislative Advocates (RDLA) will schedule meetings for you and help you to prepare. No prior advocacy experience is necessary. When? Meetings with Members of Congress will take place between August 5th and August 16th. We will be offering training webinars to help advocates prepare for their meetings. July 16th, 12pm ET: General Training Webinar – Register Here July 24th, 12pm ET: Team Coordinator Training Webinar (A link to attend this training will be sent to all confirmed team coordinators). July 25th, 12pm ET: Share Your Story with Policymakers Webinar – Register Here

We are thrilled to invite you to the inaugural Critical Path Institute (C-Path) Global Impact Conference, taking place from September 9-11, 2024, in the heart of Washington, D.C. Hosted at the Washington Marriott at Metro Center, this can’t-miss event will provide a unique opportunity to integrate key learnings across initiatives within C-Path’s expanding portfolio, dedicated to accelerating drug development for conditions in neurology, rare diseases, pediatrics, and more. Join us to discover how C-Path can assist you in achieving your objectives in drug development. This comprehensive experience will feature highlights from each of C-Path’s Core Competencies, underscoring our mission to lead collaborations that expedite drug development and advance better treatments for people worldwide. Engage with colleagues and advocates from diverse sectors, including industry, regulatory bodies, academia, patient organizations, and the vibrant patient community. The C-Path Global Impact Conference promises a dynamic agenda, bringing together a multitude of voices and perspectives to foster collaboration and open dialogue. Stay tuned for forthcoming communications, including the full conference agenda, featured speakers, and more. Your participation is key to making this event a resounding success! REGISTER NOW

Advanced Advocacy Academy (A3) is a year-round liver advocacy program for patients, caregivers, and other interested parties featuring training programs and advocacy opportunities, with the hallmark annual 4-day Learning Experience providing comprehensive advocacy preparation each September.

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 Advocacy Summit Thursday & Friday, September 26 & 27, 2024 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 to work together to build a path to hope. This is an unparalleled opportunity for advocates, whether new or veteran, 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 improve care and accelerate change. Join us for networking, learning and inspiration. Learn More

About the RARE Health Equity Forum The RARE Health Equity Forum is the first one-of-a-kind event focused on the intersection of rare disease and health equity with an agenda built around creating systemic and organizational change. The conference was developed to better understand the persistent gaps that exist in the rare disease community for underrepresented and/or marginalized patient populations, including those who are still seeking a diagnosis or are unaffiliated with a disease-specific foundation. In its fourth year, the theme of the event will be “Together in Equity, Driving Change”. Through plenary sessions, networking and interactive table talks, the event empowers attendees with actionable tools and strategic insights to advocate for a more inclusive rare disease community.

Mark your calendar for the 2024 Autoimmune Community Summit, October 17-18. Check back soon for details and registration information. The entire autoimmune community has a home at the Autoimmune Association. Together, we are leading the fight against autoimmune and autoimmune-related diseases. We are creating hope for a future that includes more awareness and understanding, and better diagnostic tools and treatment options. The annual Autoimmune Community Summit brings together anyone affected by autoimmune disease to share information, be inspired, and create new connections. It’s important for patients to connect with others who are facing similar challenges, including the journey to diagnosis and coping with difficult symptoms. The Autoimmune Community Summit provides a platform for patients to connect, share their stories, and build a supportive and encouraging network.