Collaboration Key Theme for RARE Advocacy Summit Sessions and Networking Opportunities

July 27, 2023

The 2023 RARE Advocacy Summit will be held in San Diego, California, September 19-21.

by Sravanthi Meka

Collaboration will be a central theme throughout the 2023 RARE Advocacy Summit, featured during several plenaries, track sessions, and of course, a facilitated networking opportunity. Opportunities to collaborate have driven advances in rare disease at record speeds, whether the efforts are led by patient advocacy organizations, patients and families, or researchers and industry leaders. See which session best fits your needs, and don’t forget to register to attend the RARE Advocacy Summit by clicking the link at the bottom of the page!

Opening Plenary – Finding Your Flock: Emerging Opportunities to Accelerate Research Through Disease Community Collaborations
Learn how rare disease communities can collaborate in ways big and small, to aid strategic planning, implement shared laboratory and clinical research studies, and identify and address critical challenges in therapeutic development. Concrete case examples highlight the benefits of identifying rare disease partners based on shared symptoms, shared disease biology, and organizational maturity.
Moderator: Karmen Trzupek, MS, CGC – Senior Director of Scientific Programs, Global Genes
• Scott Demarest, MD – Associate Professor, Children’s Hospital of Colorado
• Eric Sid, MD – Program Officer NIH, NCATS Office of Rare Disease Research
• Suki Bagal, MD, MPH – Global Lead for Medical Affairs and Strategy, Vertex
Wednesday, September 20, 2023
9:00am – 9:45am PT

Working Nicely in the Same Sandbox – How Patient Groups Can Work Together, Not Against Each Other.
Part of Track 2, Community and Capacity Building, this session will show how three organization leaders in the MPS community have developed a collaborative relationship by focusing on shared goals and passion for the patient community. Find out how foundations can work together and what you can do as a leader to produce this cohesive relationship in your community.
Wednesday, September 20, 2023
2:00pm – 2:45pm PT

Power of Partnering
Part of Track 3, Becoming a Research-Ready Organization, this session will focus on the collaborative research models and case studies involving Children’s Hospital Colorado, including its Neurogenetics Clinic and STXBP1, SLC6A1, and the Commission on Complex Copy Number Variants.
Moderator: Scott Demarest, MD, Associate Professor Pediatrics and Neurology, Children’s Hospital Colorado
Melissa Hioco, Development Director, STXBP1
Yssa DeWoody, PhD, Co-Founder, Treasurer, Director of Research, Ring 14 USA

Wednesday, September 20, 2023
3:00pm – 3:45pm PT

Birds of a Feather Networking Session
Part of Track 3, Becoming a Research-Ready Organization, this facilitated networking session will allow patient advocacy leaders to increase their impact and make funding dollars go further by collaborating with related disease communities and aligned organizations. Find your flock in this facilitated networking session.
Wednesday, September 20, 2023
4:00pm – 4:45pm PT

Plenary Panel: It’s All of Us Against the Disease: The Future of Research Collaborations and Disease Community Consortiums
Data pooling and aggregation of multi-sourced data can speed progress in research.  Challenges to this approach may not stem not from technology or science, but from human nature.  Hear directly from change agents driving these multi-stakeholder consortiums about their challenges and successes.
Ryan Colburn, Pompe Consortium
Carole Bakhos, Project Director, Jordan’s Guardian Angels
Adam Staffaroni, PhD, Assistant Professor, UCSF
Thursday, September 21, 2023
10:00am – 11:00am PT

Closing Plenary Keynote: Rebel Health: How Rare Disease Communities Lead the Revolution
Speaker: Susannah Fox, Author, Digital Health Expert, and Advisor for the Patient-Led Research Collaborative
“Health care needs to invite the rebels inside, to connect them with the resources they need to test and scale their ideas,” says Susannah Fox, author of Rebel Health, a how-to guide that will help patients, survivors and caregivers learn new skills and deploy them for their loved ones.
Thursday, September 21, 2023
11:00am – 12:00pm PT

Global Genes’ 12th Annual RARE Patient Advocacy Summit is one of the world’s largest gatherings of the rare disease community. The event is an opportunity for advocates to learn, network, and inspire each other as they interact with researchers, healthcare professionals, drug developers and other advocates during the three-day event that runs September 19 through 21 at the Sheraton San Diego Hotel & Marina on Harbor Island Drive in San Diego. RARE Advocacy Summit is part of Global Genes’ Week in RARE, and will be preceded by the RARE Health Equity Forum, September 18 and 19.

More about RARE Advocacy Summit

More about RARE Health Equity Forum

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