About Us
Global Advocacy Alliance
A global community changing the way the world tackles rare disease
Join Now See Member EventsThe 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.
Member Organizations
Countries
Diseases Represented
Sharing Your Successes
Has something great happened with your organization lately? Did you meet an organizational goal, kick off a campaign or event, or conduct some great work in your community? Maybe you participated at a summit or collaborated with another organization?
Whatever your recent success is, we want to hear about it! Submit your stories of success, and let the Global Advocacy Alliance share in your victories! We’ll feature your stories in our month Global Genes blog!
Share Your Story Read a Success StoryResources
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.
Diversity, Equity, Inclusion & Accessibility
Defining Underserved & Underrepresented Populations
DEI Seminar, Part 1
Panelists:
Khaleelah Cohen, Tuesdi Dyer, Lisa Schoyer
Building Cultural Humility
DEI Webinar, Part 2
Panelists:
Monair McGregor, PhD, MPH, MCHES
Vanessa Hiratsuka, MPH, PhD
Nisha Venugopal, PhD
Carlos Durand
Starting & Building Your Organization
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.
Learn MoreReady 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.
Learn MoreManaging 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 MoreDevelop 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 SessionBoard 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 & LearnBecoming Research Ready
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 WebinarFinancing 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 WebinarCollecting 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 WebinarWe 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 SessionThe 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 SessionMarketing & Raising Awareness
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 & LearnCreating 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 WebinarUse 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 ToolkitRARE 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.’
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 WebinarShare 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 communityCollaboration
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 SessionBuilding 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 WebinarCollaborations 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 SessionFunding 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 SessionWe 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 SessionThe 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 SessionFundraising
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 SessionFinding 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 ToolkitEssential 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.
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 SessionDeveloping 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 SessionFunding 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 SessionGrief & 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 ResourcesGrant 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 & LearnGrant Readiness Workbook
Lauren Isbell, CEO of Nevus Outreach, created this workbook to help help organizations prepare for applying for a grant.
Download WorkbookOnline 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 MoreTop Grant Writing Classes
Ready to start applying for grants? What’s next? Which courses are relevant for you and worth investing?
Learn MoreWorking with Industry
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 & LearnGetting 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 & LearnWhat 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 WebinarIn & 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 SessionShow 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 SessionExpanding Work Internationally
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 MorePartnering 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 MoreBuilding 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.
Mental Health for Caregivers
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 MoreNavigating 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 WebinarMore 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.
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].