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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 Learning Lab is an exciting benefit available only to Global Advocacy Alliance members

Educational webinars will focus on relevant topics identified by feedback from members. RARE Learning Labs (formerly 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].

Global-Advocacy-Alliance

Upcoming Global Advocacy Alliance RARE Learning Lab Events

Mental Health Virtual Sessions: Coping Skills to Help Kids Living with a Chronic Illness

Thursday, April 11, 2024 – 3:00pm ET

In this one hour virtual learning session, learn about the factors affecting mental / emotional health, the social and physical changes that kids experience that leads to differences from their peers, increases stress, anxiety and possible depression. Learn about a variety of coping techniques and outlets for expression, you can teach your child – and even do with them – from a variety of creative endeavors, to mindfulness, support / therapy options, to developing a Coping Toolbox.

Register Now

2024 2nd Quarter Global Advocacy Alliance Members Call

Wednesday, May 8, 2024 – 4:00pm ET

Join us for our Q2 GAA Update call. During this session Global Genes will reflect on the first half of 2024 and share plans for the second half of the year. You’ll also have the opportunity to network with fellow GAA members. Come prepared to share about the work your organization does, any challenges you’re facing and any wins you want to celebrate! Note: This year’s quarterly calls will be held on a rotating time-zone schedule to accommodate our members globally.

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Mental Health Virtual Sessions: Coping Skills for Caregivers

Thursday, May 9, 2024 – 3:00pm ET

Caregivers want to do everything to help their child, sometimes to the detriment of their own health. As the flight attendants always say, ”put your mask on first, then help your child with theirs.” In this 1-hour session, reflect on the emotional, social and physical impacts that having a chronically ill child makes upon caregivers and the family as a whole. Develop a resource kit and learn about 4 core strategies for coping and tips for self-care, as well as tools that other family members can also use. There will also be time for questions and discussion!

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2024 Q3 Members Call

Wednesday, August 14, 2024
Time: 5:00am ET

Join us for our Q3 GAA Update call. During this session you’ll receive some exciting updates about the upcoming Week in Rare and have the opportunity to network with fellow GAA members. Come prepared to share about the work your organization does, any challenges you’re facing and any wins you want to celebrate! Note: This year’s quarterly calls will be held on a rotating time-zone schedule to accommodate our members globally.

Register Now

2024 Q4 Members Call

Tuesday, December 3, 2024
Time: 9:00am ET

Join us for our Q4 GAA Update call. During this session Global Genes will reflect on 2024 and share some exciting updates for 2025. You’ll also have the opportunity to network with fellow GAA members. Come prepared to share about the work your organization does, any challenges you’re facing and any wins you want to celebrate! Note: This year’s quarterly calls will be held on a rotating time-zone schedule to accommodate our members globally.

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.

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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:

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

Reinvigorate Your Learnings from Health Equity Forum 
Speaker:
Rachel Barron, Senior Manager, Health Equity, Global Genes

Continuing the Conversation from Global Genes Rare Advocacy Summit
Speakers: Arik Johnson, Bojana Mirosavljevic

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

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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.