About Us

Global Advocacy Alliance

A global community changing the way the world tackles rare disease

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The Global Advocacy Alliance is a global community of non-profit organizations and support groups who are committed to changing the way the world tackles rare disease. Together, more than 700 organizations from around the world are working to build awareness for rare diseases, create community & support networks, increase education on specific rare diseases, work toward treatments and/or cures, propel research forward, and meet specific needs of people with rare diseases through direct patient assistance programs.

Joining the Global Advocacy Alliance will allow non-profit and rare disease support groups to enjoy added benefits, high-touch communications from our Global Genes team, and more engagement with fellow Global Advocacy Alliance members.


Connection

Connect – and stay connected – with other organizations, build relationships, tackle common issues, and support each other’s work.

Education

Get information you need – whether your organization is just beginning or are long established to help your organization expand and better serve your community

Belonging

Find a place among like minded leaders who share similar goals. People who are going through similar things. Make a change for your disease. 

The Global Advocacy Alliance is made up of organizations that focus on disease education, advocacy & policy work, mental health programs & services, community support, financial support, research, and more.

700+

Member Organizations

46

Countries

1000+

Diseases Represented


Resources

Explore capacity building and educational resources that will help you build a strong organization and better serve your community. Find featured resources by topic below, or contact our dedicated Global Advocacy Alliance team for your specific needs.

Defining Underserved & Underrepresented Populations

DEI Seminar, Part 1

Panelists:
Khaleelah Cohen, Tuesdi Dyer, Lisa Schoyer

Watch Webinar

Building Cultural Humility

DEI Webinar, Part 2

Panelists:
Monair McGregor, PhD, MPH, MCHES
Vanessa Hiratsuka, MPH, PhD
Nisha Venugopal, PhD
Carlos Durand

Watch Webinar

Starting a Non-Profit: The First Step

This toolkit streamlines the initial steps of starting a non-profit — from completing the required paperwork to establishing internal structure.

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Ready to Start a NonProfit?

Forming a nonprofit may feel like a daunting process, but this toolkit will help prepare you, including answering preliminary questions and exploring alternative options.

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Managing Volunteers

Hear from non-profit leaders about how to recruit volunteers, how to engage dedicated volunteers and how volunteer management is an organization-wide effort.

Learn More

Develop a Long-Term Growth Strategy

Gather insights into strategic planning, recruiting active leaders, and tracking success. Also learn how to build relationships with other rare disease organizations and assemble health and medical review boards.

Watch Session

Board of Directors 101

During this webinar, you may learn about board member responsibilities and setting expectations, tips to navigate the challenges of well-meaning board members who are not able to fulfill their board duties, and board recruitment

Watch Lunch & Learn

What Does It Take to Become a Research-Ready Organization?

Understanding the research process and making sure you have the right pieces in place can attract researchers and industry investors. This webinar will cover terms and concepts you need to know to prepare your community to engage with researchers and biotech.

Watch Webinar

Financing Research

In this webinar, you will hear from rare disease leaders who want to move research forward as quickly as possible and often find they must raise funds to make things happen and decide where these funds should be directed. They will share their successes and help you identify strategies that will work well for you.

Watch Webinar

Collecting Your Community’s Health Data for Researchers

If you are a leader of a rare disease patient advocate organization or nonprofit, this webinar will show you how RARE-X, a Global Genes program, can help you build a data collection program.

Watch Webinar

We Can’t Do It Alone: Structure & Governance for Research Collaborations

Collaboration is key to advance research for rare disease. Rare disease leaders discuss the structure and development of research collaborations and how to ensure strong collaborations for advancing rare disease.

Watch Session

The Secret Sauce for Forward Movement in Research & Scientific Collaborations

Getting to a treatment or cure for rare diseases means engaging in scientific research. Rare disease leaders explain how a Chief Scientific Officer (CSO) can transform your organization’s research efforts.

Watch Session

Marketing Strategies & Best Practices

During this session with Global Genes own, you will learn strategies to increase visibility, maximize google ads, and social media best practices.

Watch Lunch & Learn

Creating an Awareness Day

In this webinar, you’ll learn from three experts on the process and key steps to a successful awareness day campaign for your community.

Watch Webinar

Use Storytelling to Raise Awareness for Your Rare Disease

This toolkit will help you overcome the challenges of telling your rare disease story by offering advice on ways to get started.

View Toolkit

RARE Disease Storytelling

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.’

Watch Lunch & Learn

Marketing Strategies & Best Practices

During this lunch and learn webinar with Global Genes’ marketing team, you will learn strategies to increase visibility, maximize google ads, and social media best practices.

Watch Webinar

Share Your Story

Although individual diseases are vastly different, our stories and experiences bond us as a rare community.

Share your story as a patient, advocate, caregiver, or supporter to be featured in our community stories.

Share Your Story Read stories shared by the rare disease community

Working Nicely in the Same Sandbox

Three organization leaders developed a collaborative relationship by focusing on shared goals and passion for the patient community. Find out how foundations can work together and what you can do as a leader to produce this cohesive relationship in your community.

Watch Session

Building Successful Collaborations Between Advocates and Researchers

GIST researcher Dr. Jason Sicklick and GIST Advocate Debra Melikian discuss how they have managed to build such a uniquely successful professional relationship when it comes to advancing GIST research.

Watch Webinar

Collaborations Among Foundations

Alliances among foundations can help to avoid duplication of efforts, do more with limited funding and resources, and gain leverage with other organizations. Learn about the challenges and how to ensure success of these collaborations.

Watch Session

Funding and Collaboration Opportunities

The first step in identifying funding sources is knowing that they exist, and where to look. This session covers the process of identifying both federal and state funding sources for rare disease research.

Watch Session

We Can’t Do It Alone: Structure and Governance for Research Collaborations

Leaders from several organizations discussed the structure, development and maintenance of research collaborations and how to ensure strong collaborations for advancing rare disease.

Watch Session

The Secret Sauce for Forward Movement in Research and Scientific Collaborations

Getting to a treatment or cure for rare diseases means engaging in scientific research. Rare disease experts discuss how a Chief Scientific Officer can transform your organization’s research efforts

Watch Session

Fundraising Ideas Anyone Can Try

Fundraising for research, support services and other resources can be challenging to organizations regardless of size. Advocacy organization leaders share which fundraising tactics worked, and which failed to gain traction.

Watch Session

Finding Your Fundraising Strategy

The personal stories, resources, tips, and suggestions for self-reflection in this toolkit will be the path to making change for your rare disease more manageable.

Download Toolkit

Essential Tips for Fundraising

Nonprofits often struggle with fundraising. Learn five essential tips to fundraise effectively, use the supporting tools,
and you will be well on your way to a stronger organization showing tangible and clearer results.

Watch Session

Fundraising Dos & Don’ts

Non-profit organization leaders share knowledge fundraising for non-profit organizations in the rare disease space, including goal-setting for fundraising, what an organization needs to do before starting the fundraising efforts, and when to involve researchers and other industry professionals.

Watch Session

Developing Sustainable Funding Models for Your Organization

There’s no one-size-fits all solution for finding the funds that will allow your advocacy organization to survive and grow. The key is to identify a strategy that will work for you. This session outlines various models of success including events, crowdsourcing, donor relations and grants.

Watch Session

Funding Sources You May Not Have Heard Of Funding and Collaboration Opportunities

The first step in fundraising for non-profits is knowing which funding sources exist, and where to look. This session covers the process of identifying both federal and state funding sources for rare disease research.

Watch Session

Grief & Mental Health

Rare conditions can have a significant impact on the mental and emotional well-being of individuals living with the condition and their care bubble (caregivers, care partners, siblings, spouses, etc.)

Global Genes understands the challenges and obstacles that the rare disease community faces when it comes to mental health and emotional well-being, and we are here to help.

Mental Health Resources

Grant Writing

Grant Writing 101

Lauren Isbell, CEO of Nevus Outreach, outlines basic grant writing skills and walk through a check-list to determine if your organization is grant ready.

Watch Lunch & Learn

Grant Readiness Workbook

Lauren Isbell, CEO of Nevus Outreach, created this workbook to help help organizations prepare for applying for a grant.

Download Workbook

Online Grant Writing Class

Ready to learn how to write a winning nonprofit grant proposal? Learn where to find grants, how to become a grant writer, and grant writing best practices.

Learn More

Top Grant Writing Classes

Ready to start applying for grants? What’s next? Which courses are relevant for you and worth investing?

Learn More

Working with Pharmaceuticals

Tricha Shivas, Chief Strategy Officer, Foundation for Sarcoidosis Research, outlines how to work with the pharmaceutical industry, including navigating relationships and conversations, approaching clinical trials, and engaging legislative and policy work.

Watch Lunch & Learn

Getting Your Community Ready for Clinical Trials

This webinar will provide resources for advocacy leaders to educate their communities about research opportunities and provide the information they need to make good decisions regarding participation.

Watch Lunch & Learn

What Does It Take to Become a Research Ready Organization?

Understanding the research process and making sure you have the right pieces in place can attract researchers and industry investors. This webinar will cover terms and concepts you need to know to prepare your community to engage with researchers and biotech.

Watch Webinar

In & Out of Industry: What You Need to Know About Working Together

This session will discuss those different advocacy roles, how to identify overlapping goals between industry and rare disease, and how to measure the effectiveness of these collaborations.

Watch Session

Show Your Data: What Do You Need To Have Before Approaching Industry

Patient advocacy organizations can learn what they need to have before they approach industry, including structuring and developing collaborations, starting and maintaining patient registries, and patient-reported outcomes.

Watch Session

Legislative

Bringing Rare Disease to Capitol Hill: Advocating for Your Cause

Laws and bills go before Congress every day that can directly impact the rare disease community—as a result of advocates like you! This toolkit will help integrate you into the public’s role in government.

Learn More

Partnering with State & Federal Representatives

Sharing your story with legislators can have a huge impact on rare disease awareness. This toolkit can help you build confidence with advocacy, understand what is on a state vs federal level, and show you how to raise awareness for your rare disease.

Learn More

Building a Relationship with Your Legislators

You don’t have to become a political “wonk” to be a successful advocate, but knowing the basics makes it easier to navigate the road ahead. This toolkit shows you how to
educate your legislators about your rare disease advocacy goals.

Learn More

Rare Disease Caregiving in America

Rare Disease Caregiving in America is a national research study from 2018 of 1,400 family caregivers of children and adults with a rare disease. This study paints a picture of friends and families facing emotional, financial, physical, and social strain with little support from outside resources.

Learn More

Navigating Grief & Trauma

In this webinar, Ronda Thorington, Licensed Professional Counselor, discusses the impact that ambiguous grief and medically-induced PTSD has on families, specific strategies to help families experiencing grief and trauma, and signs that a family may be in need of additional support.

Watch Webinar

More Resources Coming Soon!

Check back for more resources to be added throughout the year.

To enjoy the life-time benefits of the Global Advocacy Alliance, your organization must be a support group, U.S. Foundation with 501(c)(3) status or international foundation/registered charity and offer rare disease information or support in one or more of the following ways: patient/caregiver support, healthcare provider education, public awareness and advocacy and/or research. 

Global Advocacy Alliance Benefits

  • Official Alliance Member
  • Network with a global community on our Facebook group
  • Monthly GAA Newsletters
  • Receive Discounts for Global Genes Events
  • Your Organization listed on Global Genes website
  • Eligibility for all Global Genes open grants
  • Access to Global Genes Partners, Initiatives or Tools to assist your organization with your goals and needs
  • Dedicated GAA members meeting at the Annual Health Equity Summit
  • Participate in research that can bring about change to rare disease patients/communities
  • Train to become an empowered patient advocate and build your organizations capacities
  • Opportunities for mentorship
  • Opportunity to be a GG Ambassador at other rare meetings, access to social media engagement
  • Unique benefits of community group on Facebook

Once your organization completes the membership application, you’re a member for life!

All we ask is that you update your contact information. A form will be sent to you via email on a yearly basis so we can ensure we’re able to reach your organization, share relevant up-to-date information and refer patients, families and caregivers to you for support, education, etc.

Global-Advocacy-Alliance

Current Foundation Alliance Members

To continue uninterrupted access to all current benefits, including grant eligibility, event discounts, and access to Global Genes Partners, Initiatives, or Tools to assist your organization with your goals and needs, you will need to join the Global Advocacy Alliance.

Foundation Alliance members will still have access to the Facebook Group. All other previous benefits will only be available to members of the Global Advocacy Alliance.

Questions about Membership?

Email our team at [email protected].