Global Genes Guide to Cooperating Among Patient Advocacy Organizations

This Global Genes Quick Guide is a resource for advocates focused on pressing topics causing challenges in their lives and communities. 

Beyond Boundaries: 

How Patient Advocacy Groups Can Cooperate for Greater Impact

In the rare disease space, many communities face the challenge of not yet having a dedicated patient advocacy organization. But sometimes, the opposite occurs—multiple groups emerge, each focused on the same condition. When that happens, how can these leaders work together rather than in parallel? How can collaboration replace duplication, and unity drive greater impact?

Patient Advocacy Groups often discover that cooperation magnifies their reach and effectiveness. Each organization brings distinct strengths—whether in research, community support, communications, or fundraising. By recognizing and aligning around those unique assets, groups can amplify what they do best and create collective wins for the entire community.

Below are practical ways to explore collaboration and strengthen your shared mission:

• • Launch a Shared Awareness Campaign Combine resources for joint initiatives such as Rare Disease Day events, social media efforts, educational one-pagers, or webinars. A unified campaign can maximize visibility and ensure consistent, high-impact messaging.
  • Coordinate Policy and Legislative Advocacy Join forces to advance shared policy goals—whether improving access to care, increasing research funding, or influencing healthcare legislation. Speaking with one strong, unified voice helps drive meaningful change.
  • Share Public Resources Pool educational materials, toolkits, or support programs so all patient communities benefit from the best available guidance. Shared resources can extend your collective reach and reduce duplication of effort.
  • Collaborate on Research and Data Initiatives Consider partnering on patient registries, surveys, or studies rather than hosting competing versions. Global Genes offers the RARE-X platform to meet this need. Collaborative data collection builds stronger, more representative datasets that benefit research and advocacy alike.
  • Pursue Joint Fundraising Opportunities Plan co-branded fundraising events, campaigns, or grant applications to expand financial capacity. Shared fundraising not only grows resources but also signals unity to donors and partners.

• • Unify Patient Support Programs Establish shared support groups, mentorship programs, or helplines to ensure that all patients and caregivers receive coordinated assistance—and that no one falls through the cracks.
  • Create a Coordinating Coalition Forming a coalition or alliance helps streamline communication, reduce overlap, and align strategies across organizations. A well-organized umbrella group can serve as the go-to gateway for patients and stakeholders seeking trusted information and support.

“When I started Dreamsickle Kids Foundation, I quickly learned that advocacy is as much about collaboration as it is about courage. In the rare disease space, our communities overlap more than we realize — and so do our challenges. But when overlap turns into competition, we lose sight of the mission. Building a patient advocacy organization requires humility, communication, and the willingness to sit at the table with others who share the same heart for impact. True progress comes when we move past ownership of ideas and focus on ownership of outcomes — creating stronger coalitions that serve the collective good of the people we advocate for.”
– Gina Glass

“We adopted “collaboration” as a core value at the TSC Alliance and we believe it makes us stronger as an organization and allows us to meet strategic objectives in an accelerated way.  

This comes in many different forms – collaboration with other organizations

• when you have a shared need to raise awareness
  (TSC Awareness Day with associations working together worldwide through TSC International or improving diagnosis and faster treatment of infantile spasms with the Infantile Spams Network/Infantile Spasms Awareness Week);
• when you don’t want to duplicate efforts because someone is already doing it beautifully
  (transition of care guidelines from the Child Neurology Foundation or transition services available through The Arc);
• when you want to move public policy or government advocacy forward
  (working toward a National Plan for Epilepsy through the Epilepsy Action Network);
• when it helps accelerate research by joining together
  (as is the case with The LAM Foundation through our joint research conferences, Externally-Led Patient Focused Drug Development Meeting, and jointly funded research grants). 

When there is another organization in your space, change the narrative from competitor to ally and what can be accomplished when you join together to better serve your patient community(ies). Make sure you have upfront conversations to outline the goals of the collaboration, expectations, roles and be absolutely transparent.  Open conversations always lead to better outcomes. “ 

 – Kari Luther Rosbeck, President and CEO, TSC Alliance

In this clip, Payal Patel of the DLG4 SHINE Foundation, shares tips for the small specific projects that can become your first efforts to collaborate with other PAGs in your disease area –even if they have been resistant to the idea at first.

Laura Hattersly, is the founder of CASK Research, a RARE-X Patient Advocacy Group.  When Laura’s first-born was diagnosed with MICPCH at 12 months old she retired from teaching genetics, biochemistry and gene technology in order to better care for her daughter. She founded CASK Research in 2022 after identifying an unmet need to provide funds and drive translational research efforts into CASK disorders. She shared this advice on cooperating and collaborating with other patient advocacy organizations:

“My experience is that successful collaboration between charities is built on communication, respect, and genuine support.

• Charities shouldn’t aim to dominate a space, but to help it grow. When reaching out to form partnerships, make that spirit of contribution clear from the outset.
• True collaboration means giving as well as taking – sharing skills and resources so that everyone saves time, energy, and money.
• It often helps to formalize your partnership with a shared identity. We created the CASK Coalition, which achieved two things: it impressed researchers with a global, organised network, and it made it easier to share achievements publicly, allowing all members to benefit from one another’s successes. We host all member research initiatives on a single webpage – it’s both informative and creates a stronger, more professional presence than any one charity could achieve alone.
• Formal structures also reduce competition by clarifying expectations. For example, our members all support the global CASK registry, which prevents duplication of effort and competing registries. Regular, structured meetings ensure everyone is aware of ongoing studies, encouraging transparency and collaboration.
• Finally, it’s vital to stay realistic – not every organization will want to collaborate, no matter how much you invest in making it work. But those that do can achieve far more together than they ever could apart.
  – Laura Hattersly

Amber Denton, a member of the Global Genes Advocacy Alliance Leadership Council and President of the NBIA Disorders Association, has a wealth of experience cooperating with related organizations. 

The NBIA Disorders Association, founded in 1996, was the first organization established to support individuals with NBIA disorders. Over the years, they have built a global network through the NBIA Alliance, uniting nine sister organizations worldwide. More recently, they have seen a large increase in nonprofits focusing on single NBIA disorders, which has brought both opportunities and challenges.

Because each organization often worked independently, there was sometimes duplication of efforts in an already limited funding space. To address this, Amber’s organization committed to becoming the convener, bringing groups together around shared goals while respecting each organization’s unique priorities.

Here are some key strategies that have worked for her:

• Create structured forums for collaboration. We launched Research Roundtables, held virtually every six months, where nonprofit leaders share updates on ongoing and new research, explore funding opportunities, and identify areas for collaboration.

• Develop shared resources. To prevent duplication, we created a grant workbook documenting all funded projects, principal investigators, institutions, funding gaps, and impact on progress. We also maintain a researcher database that tracks available samples, registries, and natural history studies.

• Map the landscape. We conducted a landscape analysis to identify progress and gaps across each NBIA disorder. Building on this, we are developing a Research Roadmap to outline the different therapeutic paths such as drug repurposing, small molecule development and gene therapies, while aligning efforts across organizations and ensuring the community is fully “trial ready.”

• Honor diverse approaches. We recognize that some nonprofits choose to focus on a single therapeutic path. Our philosophy is to support multiple avenues to maximize the chance of success. The Research Roadmap helps everyone see where work is happening, where priorities lie, what gaps remain, and where collaboration can move progress forward.

• Give credit generously. Trust and transparency are vital. We highlight other organizations’ contributions in newsletters, celebrate collaborative grants, and emphasize that all groups are an essential part of moving the needle forward. This builds confidence among families and donors, showing that nonprofits can work respectfully and effectively together.
• Lead with inclusivity and respect. We continually remind fellow organizations that we share the same passion and ultimate goal: treatments and cures for NBIA disorders. By supporting one another and openly sharing resources and ideas, we strengthen the entire rare disease ecosystem.

“ True collaboration requires setting aside ego and embracing the belief that every organization brings value to the table. When we lead with transparency, respect, and a commitment to shared progress, families see a united community working together toward the same goal, finding treatments and, ultimately, a cure.” – Amber Denton

By joining forces, advocacy organizations can strengthen their collective impact and accelerate meaningful change for the patient community. Consider the impression created by any of the efforts above when one PAG logo is featured versus when 3, 4, or more PAG logos are shown. The implication is of a unified front or a ground swell of support rather than an isolated effort.

Closing Thought

True collaboration isn’t about merging missions—it’s about magnifying them. By working together with transparency, trust, and shared purpose, advocacy organizations can elevate their collective impact and accelerate progress for every person living with a rare disease.

Resources

• Leadership: from Conflict & Competition to Cooperation & Collaboration – recording from RARE Advocacy Exchange 2025
• Global Genes RARE Webinar: Collaboration Among  Foundations, with Kari Rosbeck and Kelly Ranallo  
• Once Upon a Gene Podcast with Payal Patel on How to Make a Difference
•  Working Nicely in the Same Sandbox – video from RARE Advocacy Summit 2023 
• It’s All of Us Against the Disease – video from RARE Advocacy Summit 2023

Global Genes 2025 Quick Guide Series is our way to respond to a common need we have heard for more information in the rare community. Think of them as the answer to one frequently asked question or pain point we have heard from our Rare Concierge, our online and in person communities and our Global Advocacy Alliance.  Each one is complete with links to additional related resources across various media types, both those that are authored by Global Genes and from outside sources as well.

This series is supported in part by: Amgen, Amicus, Beam Therapeutics, Biocryst,  BridgeBio, Chiesi, Mallinckrodt Pharmaceuticals, Merck, and Parexel