About Us
Global Advocacy Alliance Events
Global Advocacy Alliance members have access to exclusive educational webinars focusing on topics that help rare disease foundations become better equipped to serve the community
RARE Lunch & Learn is an exciting benefit available only to Global Advocacy Alliance members
Educational webinars will focus on relevant topics identified by feedback from members. Lunch & Learns are an additional opportunity to provide support and education to our members.
Sample topics include research poster presentations and how to expand your organization from volunteers to paid staff.
You can sign up to participate in all of these events, or just choose a few topics you’re interested in. If you have any ideas or suggestions of topics to focus on during these meetups, please feel free to forward your ideas to [email protected].
Upcoming Global Advocacy Alliance Lunch & Learn Events
Reinvigorate Your Learnings from Health Equity Forum | Wednesday, October 25, 2023, 4pm – 5pm EST
Share what you’ve learned at the 3rd annual RARE Health Equity Forum:
* What lessons and/or skills did you take away?
* What would you like to see moving forward?
Speakers: Coming Soon
Global Advocacy Alliance: Q4 Virtual Networking Session | Thursday, December 7 at 1:00 pm EST
Join us for our Q4 GAA Virtual Networking Session! During this session you’ll have the opportunity to meet and network with like-minded organizations doing similar work.
Register NowThank you to all of our Global Advocacy Alliance members for your support of these events.
Not a Global Advocacy Alliance Member Yet?
You can learn more and sign up your organization today.
Join Now*Important Note: To attend these online events, you must be a registered member of the Global Advocacy Alliance. The Global Advocacy Alliance has evolved and replaced the Foundation Alliance you were previously a part of, and the eligibility you had through the Foundation Alliance to attend Lunch & Learns is no longer active.
Past Global Advocacy Alliance Events
Previous webinars, lunch & learns, and quarterly update calls are available for Global Advocacy Alliance members to access through the Community Portal Login.
Below is a sample of past events that are available on the portal:
Approaching Health Equity – Stories from Grant Winners
Past Health Equity in RARE grant recipients discuss their experience with receiving the grant and working through their projects
Lunch & Learn: How to Improve Your Fundraising
Speaker: Lisa Zola Greer, Philanthropist, Entrepreneur, Author
Lunch & Learn: Financial Resources and Financial Navigation
Speaker: Erin Bradshaw, Chief of Mission Delivery, Patient Advocate Foundation
Lunch & Learn: Working with Pharmaceutical Companies
Speaker: Tricha Shivas, Chief Strategy Officer, Foundation for Sarcoidosis Research
Lunch & Learn: General Info Session with RARE-X
Speaker: Megan O’Boyle, Patient Engagement Lead, RARE-X
Board of Directors 101
Speaker: Anne Gingerich
Global Genes Patient Services
Learn about the Global Genes Patient Services team and how they can compliment or supplement the work you’re doing for your rare disease community.
Expanding Work Internationally
Speaker: Lara Bloom, President and CEO of the Ehlers-Danlos Society
Marketing Strategies and Best Practices
Global Genes Marketing Team
Culture Series: Understanding Cultural Competence vs. Humility & Beyond
Speaker: Kerri Norris, PhD, JD, MPH, MCHES
Give An Hour
Speakers:
Michael Morisett, Outreach Coordinator, Give an Hour
Julie Wells, Rare Caregivers Support, Give an Hour
Educating Patients About Clinical Trials
Speaker: Aaron Abend, Executive Director at Autoimmune Registry
Giving Illness a Time out With A KId Again
Speaker: Ann Fixari, New Markets Coordinator, A Kid Again
Grant Writing 101
Speaker: Lauren Isbell, CEO, Nevus Outreach
Help Hope Live: Trusted Medical Fundraising
Speaker: Sonny Mullen, Director of Outreach, Help Hope Live
Navigating Grief and Trauma
Speaker: Ronda Thorington. Licensed Professional Counselor
Introduction to Genetic Diagnostics
Speaker: Shruti Mitkus, PhD, Director, Genetic Education and Navigation, Global Genes
Rare Disease Storytelling
Speaker: Daniel DeFabio, Director, Community Engagement, Global Genes
Log In to View More Past Events
Want member-only access to view the Global Advocacy Alliance Event Directory?
Join the Alliance to Participate
To attend upcoming online events, you must be a registered member of the Global Advocacy Alliance.