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

We Are Brave Together – Respite, Support & Resources for Caregiving Mom | Wednesday, June 7 at 4:00 pm EST

We Are Brave Together is a nonprofit organization that provides respite, support and resources for mothers caring for children of any age with disabilities, unique needs, or other medical or mental health challenges.

During this session, you’ll learn more about the work We Are Brave Together is doing to support caregiving moms as well as strategies you can implement as an organization to identify caregivers in need of support and provide resources and assistance in a sensitive, compassionate way.

Register Now

Approaching Health Equity – Stories from Grant Winners | Wednesday, June 14, 2023, 4pm – 5pm EST

Past Health Equity in RARE grant recipients will discuss their experience with receiving the grant and working through their projects including:

* What worked well
* What challenges they encountered and lessons learned
* How they have continued their work in the years following receiving the health equity in rare impact grant
Speakers: Coming Soon!

Registration Link

Global Advocacy Alliance: Q2 Virtual Networking Session | Wednesday, June 21 at 10:00 am EST

Join us for our Q2 GAA Virtual Networking Session! During this session you’ll have the opportunity to meet and network with like-minded organizations doing similar work.

Register Now

Give An Hour | Monday, July 31 at 12:00 pm EST

Give an Hour provides no-cost counseling through a network of volunteer mental health professionals and empower community through collaborative programs, peer support and educational opportunities that benefit both clients and providers.

During this session, you’ll learn more about who Give an Hour is and how you can leverage their services and resources to better support your community

Register Now

Culture Series: Understanding Cultural Competence vs. Humility & Beyond | Wednesday, August 23, 2023, 11am – 12pm EST

Recognizing how a patient’s values, beliefs and behaviors are influenced by the social determinants of health is imperative for improved health outcomes. In this webinar you will learn the fundamental principles we need to understand to have a meaningful conversation and impact when working with communities that differ from our own

Speakers: Coming Soon

Registration Link

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

Registration Link

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 Now

Thank 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:

2022 Q1 Update Call
Speaker: Craig Martin, CEO, Global Genes

Lunch & Learn: How to Improve Your Fundraising
Speaker: Lisa Zola Greer, Philanthropist, Entrepreneur, Author

Lunch & Learn: Uplifting Athletes Young Investigators Draft
Speaker: Aimei Lund, Manager, Rare Disease Engagement, Uplifting Athletes

Pre-RDDS Webinar: What Does it Take to Become a Research-Ready Organization
Speaker: Karsten Baumgaertel, PhD, Director, Translational Biology, Travere Therapeutics

Pre-RDDS Webinar: Getting Your Community Ready for Clinical Trials
Speaker: Gabrielle Rushing, PhD, Director of Research, TSC Alliance
Speaker: Kari Luther Rosbeck, President and CEO, TSC Alliance

Lunch & Learn: General Info Session with RARE-X
Speaker: Megan O’Boyle, Patient Engagement Lead, RARE-X

Q2 GAA Update Call
Speaker: Craig Martin, CEO, Global Genes

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 and Learn: Defining your Underserved/Underrepresented Patient Population
Speakers: Khaleelah Cohen, Diversity & Inclusion Programs Consultant, Foundation for Sarcoidosis Research
Tuesdi Dyer, Executive Director, CFC International
Lisa Schoyer, President, RASopathies Network

Lunch & Learn: General Info Session with RARE-X
Speaker: Megan O’Boyle, Patient Engagement Lead, RARE-X

Board of Directors 101 with Anne Gingerich
Speaker: Anne Gingerick, Executive Director, PANO

Speakers: Carlos Durand, Account Director, BARÚ advertising
Monair McGregor, PhD, MPH, MCHES, Community Engagement Program Lead, SiteBridge Research, Inc.
Vanessa Y. Hiratsuka, PhD MPH, Assistant Professor of Clinical and Translational Research and Co-Director of research and evaluation, University of Alaska Anchorage Center for Human Development
Nisha Venugopal, PhD, Program Manager/ Research Scientist, IndoUS Rare

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.

2022 Q3 GAA Update Call
Speaker: Craig Martin, CEO, Global Genes

Expanding Work Internationally
Speaker: Lara Bloom, President and CEO of the Ehlers-Danlos Society

Embrace New Ways of Communication: Grow Your Reach
Speakers: Behtash Bahador, Director, Health Literacy, CISCRP
Diana Tran Chavez, Group Creative Director, Evoke Mind+Matter
Johanne Laboy, Head of Community Engagement, SiteBridge Research, Inc.
Gareth Baynam, Medical Director, Rare Care Centre

Post-RDDS Webinar: Financing Research
Speakers: Brittany Stineman, Founder and Volunteer President, smashSMARD
Sanath Kumar Ramesh, Founder & CEO, Open Treatments Foundation and CureGPX4
Terry Pirovolakis, Founder, CureSPG50 and Director of Contact Centre Strategy, CIBC

Marketing Strategies and Best Practices
Speakers: Lauren Alford, Sr Director Marketing & Communications, Global Genes
Sravanthi Meka, Sr Manager Content Marketing, Global Genes
Katherine (Kat) Lim, Sr Manager, Digital Marketing, Global Genes
Adriana Nelson, Assoc Marketing Manager, Global Genes
Nikki Berry, Senior Brand Manager, Global Genes

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

Q4 GAA Update Call

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

Q1 GAA Update Call

Introduction to Genetic Diagnostics
Speaker: Shruti Mitkus, PhD, Director, Genetic Education and Navigation

How to Support Your Community Before, During, and After Advanced Therapy Trials
Tamara Schryver, President Thrive with PKD
Kim Nye, President, TESS Research Foundation
Dr. Nick Abreu, NYU Langone Neurogeneticist

Rare Disease Storytelling
Speaker: Daniel DeFabio, Director, Community Engagement

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.