Rare disease often thrusts individuals and families into roles they never anticipated. Whether advocating for themselves or a loved one, navigating healthcare, or creating change within your community, leadership becomes essential. Global Genes’ RARE Advocacy Exchange is a virtual event designed to empower, equip, and elevate individuals with the leadership skills to help make a change through a series of 8 no-cost sessions. We’re creating a space where seasoned leaders and those new to their rare journey can come together to exchange knowledge, develop practical skills, and find the confidence to lead effectively.
Who’s it for?
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- Anyone impacted by rare disease — patients, caregivers, family members, community leaders, or passionate advocates. You may not view yourself as a leader yet, but this series will help you discover and develop the leadership skills already within you.
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- Industry leaders working in rare who are looking to better understand the struggles and challenges someone in the rare community faces while also gaining leadership skill tips
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- Anyone who is impacted by a diagnosis, some of which you may not think of as rare, that is looking to develop leadership skills to drive change within their community.
Session Details
Over the course of eight sessions, from March through October 2025, we’ll explore topics designed to build leadership and communication skills for personal growth, effective advocacy, and stronger communities. What To Expect:
- Access and Flexibility: All sessions are free to attend and will be available on-demand after the session, eliminating barriers of cost, travel, and time.
- Practical Sessions: From navigating conflict and mastering communication to influencing decisions and engaging with key stakeholders, each session provides actionable insights you can apply immediately.
- Inspiring Speakers & Panels: Hear from patient advocates, healthcare leaders, and industry experts as they share stories and strategies to help you thrive in your advocacy journey.
- Interactive Formats: Engage in Q&A sessions, virtual networking, and breakout discussions to connect with others who share your experiences.
Kick off & Keynote: When Leadership is Thrust Upon You
Monday, March 10, 1:00-2:30pm ET
Mel Dixon, Rare mom, Cure DHDDS
Zoe Manville English, Rare mom; Singer of Portugal The Man
Kara Ryska, Host of The Special Needs Mom Podcast and The Pathway to Peace Coaching Community
Zoe English Manville shares her journey from parent to advocate after her daughter’s DHDDS diagnosis. Through her story, she emphasizes the power of finding community and healing through advocacy and creative outlets, like music. Joined by Mel Dixon of Cure DHDDS, this keynote will inspire participants to embrace unexpected leadership roles while building connections that strengthen their efforts.
Leadership Themes: Self Awareness, Learning, Agility, Influence, Collaboration
Harnessing your Values to Fuel your Leadership Strategy
Wednesday, March 12, 1:00-2:30pm ET
Amy Brin, MSN, MA, PCNS-BC, Amy Brin Consulting, LLC
This session will reframe leadership development. Attendees will discern what are their core values and how these translate into their leadership strengths and impact strategy. Through evidence sharing and new frameworks, attendees will be introduced to a conceptual construct they can immediately integrate into their leadership. Peer support, executive coaching activities and group discussion will be included throughout this session.
Leadership Themes: Strategic Thinking, Decisiveness
Thinking Outside of Your Inbox: Innovative Fundraising Opportunities
Thursday, April 10, 2:30-4:00pm ET
Jillian Arnold, Rare Disease Mom & Advocate, Podcast Host, and Author
Brittany Markham, Rare mom, ASMD
Kasey Woleben, Rare Village
Leadership in rare disease advocacy requires creativity and resourcefulness. This session highlights unconventional fundraising strategies and case studies of successful campaigns. Participants will discover how to secure funding through innovative approaches, such as partnering with non-traditional sponsors, and receive actionable tips to implement these ideas in their own organizations.
Leadership Themes: Innovation, Problem Solving
Leadership: from Conflict & Competition to Cooperation & Collaboration
Thursday, May 8, 2:30-4:00pm ET
Emily Amerson, MS, Rare Parent, President, CTNNB1 Connect & Cure
Chandler Crews, Rare individual, Achondroplasia; The Chandler Project
Payal Patel, Rare mom, DLG4
Sarah Shaffer, Rare Mom; author
Collaboration among advocacy organizations can sometimes lead to competition or conflict. This session offers practical strategies for fostering partnerships, improving communication, and resolving disputes. Participants will develop the skills needed to build stronger coalitions, ensuring collective efforts work towards shared goals for their community.
Leadership Themes: Collaboration, Communication, Conflict Resolution
Interacting with the FDA: PFDD and Listening Sessions
Thursday, June 5, 1:00-2:30pm ET
Charlene Son Rigby, Rare mom; Global Genes
Larry Bauer, Regulatory Drug Expert, Hyman, Phelps & McNamara, P.C.
Robyn Bent, Director of the Patient-Focused Drug Development (PFDD) Program in the Center for Drug Evaluation and Research (CDER), FDA
Dorothea Lantz, Rare mom PWS, Prader-Willi Syndrome Association | USA
Engaging with the FDA requires a blend of policy knowledge, strategic timing, and strong collaboration. This session provides a roadmap for organizing Patient-Focused Drug Development (PFDD) and listening sessions, offering insights into maximizing ROI and structuring discussions. Participants will leave with practical tips, a guide for speakers, and the confidence to effectively advocate for their communities.
Leadership Themes: Knowledge of Science & Policy, Collaboration
Rare Disease Grief is a Sneaky Bitch: Grieving a RARE Diagnosis
Monday, September 15, 2:30-4:00pm ET
Daniel DeFabio, Rare dad; Global Genes
Jessie Fein, Author, Podcast Host, Mito Advocate
Lisa Keefauver, Professor of Grief; Author, Grief is a Sneaky Bitch, Podcaster
Ronda Thorington, Rare mom; Licensed Professional Counselor and Parent Coach
A rare disease diagnosis brings unique and ongoing grief. This session explores the complexities of this type of grief, offering strategies for managing uncertainty, chronic stress, and emotional challenges. Participants will learn how to find resources, support organizations, and provide compassionate leadership to others navigating similar experiences. Moderated by Lisa Keefauver author of “Grief is a Sneaky Bitch”.
Leadership Themes: Compassion, Support, Empathy
Getting A Precise Diagnosis is Critical for Adults & Children
Thursday, September 18, 1:00-2:30pm ET
Pranav Garimella, MBBS, MPH, Chief Medical Officer, American Kidney Fund
Michael Kruer, Director, Pediatric Movement Disorders Program; Barrow Neurological Institute, Phoenix Children’s
Lukas Lange, CEO and Co-Founder of Probably Genetic
Effie Parks, Rare mom, CTNNB1; Once Upon a Gene Podcast
Accurate diagnosis is vital to improving outcomes for rare disease patients. This panel explores the latest diagnostic advancements and the challenges to achieving timely diagnoses. Participants will gain strategies for advocating for better diagnostic resources and learn how precise diagnoses impact care and treatment for adults and children.
Leadership Themes: Knowledge of Science, Collaboration, Coordination of Care
Knowing the Rights for Your RARE Child (and Yourself!)
Thursday, October 16, 12:30-2:00pm ET
Michele Erwin, President & Founder, All Wheels Up
Benita Talati, Rare Individual / Attorney
Kelley Coleman, Rare mom; Author
Bo Bigelow, Rare dad, Attorney, Co-Founder Foundation for Hao-Fountain Syndrome
Understanding legal rights is critical for advocating effectively. This panel covers essential topics such as insurance policies, education laws, and healthcare access. Participants will learn how to navigate complex systems, advocate for their child’s needs, and access tailored services, becoming more confident and informed leaders in the process.
Leadership Themes: Communication, Persuasiveness, Advocacy
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