Week in Rare 2024 RARE Advocacy Summit sessions for Community & Capacity Building

January 17, 2025

The Global Genes Summit is known for bringing together those facing the challenges of rare disease life, whether they are veteran advocacy leaders or those newly diagnosed or still seeking a diagnosis. In 2024 between our plenary talks each day, attendees were able to select from three simultaneous program offerings. One focused on the individual living with a rare disease (or their caregiver). The next focused on issues important to those leaders of patient advocacy organizations who are looking to build their skills and improve the capacity of their organization. The third series of sessions centered on how advocates and PAG leaders can move the research forward for treatments for the rare disease that concerns them.

Sessions for Community & Capacity Building

Think Like a Start-Up: Grow your Patient Advocacy Group

Discover principles of fast organization building: how to create scalable and sustainable models, collect metrics, learn, adapt and adopt legal structures to protect your IP.

Moderator: Charlene Son Rigby, CEO Global Genes

Panelists:

Michael Hund, CEO, EB Research Partners
Sunitha Malepati, Founder of The Buffalo Initiative
Mark Wilhelm, Partner, Troutman Pepper

Activate Your Community

Get expert tips on building connections, attracting and managing volunteers, creating lieutenants and outreach through community and corporate partnerships.

Moderator: Effie Parks, Podcaster, Once Upon a Gene

Panelists:

Lara Bloom, President and CEO, Ehlers Danlos Society
Samantha Charleston, Director, Programs and Community Engagement, Orphan Disease Center, University of Pennsylvania
Rob Long, ED, Uplifting Athletes

Understand Newborn Sequencing and Screening (NBS)

NBS can be a path to both diagnosis and new members. Learn why genetic diagnosis is key, how to create infrastructure to support diagnosis, and how to insure access to services and equity.

Moderator: Annie Kennedy, Chief of Policy and Advocacy, EveryLife Foundation

Panelists:

Wendy Chung, M.D., Ph.D., Chief of Pediatrics, Boston Children’s Hospital
Stacey Seeloff, Director, Strategic Alliances, Rady Children’s Institute for Genomic Medicine
Brooke Thomas, Chief Programs Officer, Alabama Rare

Disability and Access
This panel will focus on best practices for ADA website compliance, accessibility for research and clinical trials, and how best to support the needs of your community.

Moderator: Kristin Smedley, Founder and CEO, Curing Retinal Blindness Foundation

Panelists:

Rachelle Cook, Rare Disease Advocate
Kendra Gottlesben, Marketing Communication Specialist, Center for Disabilities, Sanford School of Medicine, University of South Dakota
Lori Renna Linton, Rare Disease Advocate and Filmmaker

Empowering Advocacy: Federal, State & Patient Insights

Join the EveryLife Foundation for Rare Diseases for an update on advocacy opportunities at the state and federal levels. Hear directly from advocate panelists for tips and tools to take home.

Panelists:

Stephanie Riordan, Director of Patient Programs, EveryLife Foundation
James Griffin, Advocate
Paloma Juarez, Advocate
Shannon von Felden, Senior Director of Advocacy, EveryLife Foundation
Anneliese Williams, Advocate

Master Rare Disease Conference Planning

Our panel of experts will help you develop impactful family conferences and scientific meetings, including in-person and virtual events. Find out how to identify key funding sources, create inclusive and accessible events, and maximize outreach with effective marketing. Based on a new toolkit developed by Simons Searchlight and Global Genes.

Moderator: Erica Jones, MA, Outreach Manager, Simons Searchlight

Panelists:

Jessica Fein, MitoAction Advocate and Author of Breath Taking: A Memoir of Family, Dreams and Broken Genes
Ashley Point, President, Koolen-De Vries Syndrome Foundation
Michele Whiteside, Director of Programs and Events, Global Genes