Week in RARE
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. Join us September 25-28 in Kansas City!
Register Now Learn moreUpcoming Global Genes Events
Browse and find upcoming Global Genes in-person
or virtual RARE disease events by date and location hosted around the world.
* Global Genes does not sell conference/participant information or user data.
Showing Up 101
Thursday, August 15, 2024, 3pm ET
Hosted by Global Advocacy Alliance, this session will introduce frameworks for grieving and coping, and promote openness and connection for moving with loss. Led by Myra Sack, a bereaved mother and Compassionate Bereavement Care Provider.
Financial Assistance Webinar Series Part 1: What Resources and Services Are Available to You?
Wednesday, Sept 11, 2024, 3:00 PM
Financial Assistance Webinar Series Part 1 featuring speakers from Accessia Health, Patient Advocate Foundation and PAN Foundation. During this session you’ll learn about the financial assistance resources and services that are available to you.
Part 2 will have more in depth information on where to find these financial assistance resources and how to access them.
Week in RARE
September 25-28, 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.
RARE Advocacy Summit
September 27-28, 2024
RARE Advocacy Summit is an unparalleled opportunity for advocates to forge meaningful connections with others in the rare disease community for future collaboration.
RARE Health Equity Forum
September 28, 2024
Through plenary sessions, networking and interactive table talks, RARE Health Equity Forum empowers attendees with actionable tools and strategic insights to advocate for a more inclusive rare disease community.
Financial Assistance Webinar Series Part 2: Where to Go and How to Access Financial Assistance Resources and Services
Friday, October 9, 2024, 4:00 PM
The Financial Assistance Webinar Series Part 2 features speakers from Accessia Health, Patient Advocate Foundation and PAN Foundation.
During this session you’ll learn where to go and how to access the financial assistance resources and services discussed in Part 1.
Upcoming Community Events
Supporting Siblings’ Financial Planning in Adulthood – Pediatric Epilepsy Surgery Alliance
September 12, 2024
Virtual
DetailsAutoimmune Network Monthly Webinar
September 19, 2024
Virtual
Details9th Annual #CaringForRare Cycling Event
September 22, 2024
Virtual
DetailsRare Surfs
September 22, 2024
Array
DetailsChoroideremia Research Foundation International Regional Patient Meeting!
October 12, 2024
Array
DetailsRare Neuroimmune Disorders Symposium (RNDS)
October 18, 2024 – October 20, 2024
DetailsInterested in submitting your own community event?
If you or your organization has an event you would like to share, please submit!
Past Global Genes Events
2024 RARE Drug Development Symposium
The 2024 RARE Drug Development Symposium, hosted by Global Genes in partnership with the Orphan Disease Center of the University of Pennsylvania, focused on innovative ideas from next generation change-makers.. This archived page includes the agenda, recordings of the sessions, key takeaways from each session, and stats from the event itself.
Learn More2023 RARE Advocacy Summit
The 2023 RARE Advocacy Summit convened rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners, and allies. Attendees gained insights about the latest in rare disease innovations, best practices for advocating on an individual and organizational level, and actionable strategies they could take home and implement to accelerate change.
Learn More2023 RARE Health Equity Forum
The RARE Health Equity Forum convenes stakeholders in the rare disease space to identify ways to better serve marginalized populations within the rare disease community. In its third year, the event focused on the theme of “Equity In Action” and sessions provided attendees with actionable tools and strategic insights to support underserved and/or underrepresented patients within their community.
Learn More2023 RARE Drug Development Symposium
The RARE Drug Development Symposium, hosted by Global Genes and the Orphan Disease Center of the University of Pennsylvania, equips advocates with the knowledge, skills and connections they need to advance therapy development for their communities. The 2023 event focused on collaboration – the foundation of success in rare disease research.
2022 RARE Patient Advocacy Summit
The Summit forged 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.
Learn More2022 RARE Health Equity Summit
The RARE Health Equity Forum, hosted in partnership with the Rare Disease Diversity Coalition (RDDC) convenes rare disease stakeholders to identify collaborative efforts to address inequities in the care of patients with rare diseases. This event provided attendees with strategic insights and tools to empower and equip them to address racial, ethnic, gender, socioeconomic, and other disparities.
Learn More