Global Advocacy AllianceRARE Lunch & Learn is an exciting benefit available only to Global Advocacy Alliance members that 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].

Thank you to all of our Corporate Alliance members for your support of these events.

Not a Global Advocacy Alliance? You can learn more and sign up your organization today.

*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you were previously a part of, and the eligibility you had through the Foundation Alliance to attend Lunch & Learns is no longer active. To join the Global Advocacy Alliance, Click Here.


Upcoming Global Advocacy Alliance
Lunch & Learn Events

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. Below is a sample of past events that are available on the portal:

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

Lunch and Learn: Understanding Cultural Competencies
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

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



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