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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

Introduction to Genetic Diagnostics | Wednesday, April 12 at 3:00 pm EST

During this session, you’ll hear from Shruti Mitkus, PhD, Director, Genetic Education and Navigation about genetic testing and gene therapy.

Global Genes Patient Services | Thursday, April 27 at 1:00PM EST

During this session, you’ll learn more about Global Genes Patient Services team and how they can compliment or supplement the work you’re doing for your rare disease community.

Collecting Your Community’s Health Data for Researchers | Tuesday, May 16 at 4:00 pm EST

If you are a leader of a Rare Disease Patient Advocate Organization or Nonprofit, here is your chance to learn how the RARE-X program with Global Genes can help you build a data collection program.

Rare Disease Storytelling | Wednesday, May 31 at 3:30 pm EST

During this session you’ll learn the ins and outs of rare disease storytelling, including how to create and edit a video with your or your organization’s ‘Rarely Told Story.’ Community members of GAA organizations welcome!

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.

Global Advocacy Alliance: Q2 Update Call | Wednesday, June 21 at 10:00 am EST

During this session, Global Genes CEO, Charlene Son-Rigby will provide a recap of Q1 and Q2, and share exciting updates about Global Genes work in the second half of the year.

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

Global Advocacy Alliance: Q4 Update Call | Thursday, December 7 at 1:00 pm EST

During this session Global Genes CEO, Charlene Son-Rigby will recap 2023 and share exciting updates about the year ahead.

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.

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*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:

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

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

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Join the Alliance to Participate

To attend upcoming online events, you must be a registered member of the Global Advocacy Alliance.

Join Now