Blogs

Global Genes Guide to Fundraising

June 23, 2025

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

 

Fundraising is a crucial part of any advocacy organization, whether your aim is to provide financial assistance to families, build community, support research, or deliver education. As a rare patient, parent, or caregiver, you are often forced to get comfortable talking about difficult topics like rare disease and disability. But we’re not always comfortable talking about money. With so many resources available, it may be overwhelming to sort through. So, we’ve compiled a list of tips and resources to help you get started.  

From bake sales to big donors, here’s a quick guide to raising funds for your cause. 

Your Story Kickstarts Connection

With rare diseases, it can feel daunting to get people to care about an unknown or too little known health condition. People are more likely to connect and respond to helping a specific person than a faceless abstract unfamiliar disease name. Even if they’ve never heard of your disease, by keeping your focus on the story and the impact in your life, you’ll build connections that people can relate to, amplify the voices of your community, and use those experiences to inspire empathy. Relationship building will be the most important tool in your fundraising arsenal. 

Here are some tips from Lindsay Groff, Executive Director of the Barth Syndrome Foundation, on keeping your fundraising pitches relatable: 

    • Look out for being too formal and corporate in your appeals. Use conversational language to tell a story and make it personal. Try to talk to donors like talking to a friend. 
    • Use the word “you” more than the word “I”. 
    • Remember that this is an opportunity that you are empowering them to take, and your language can reflect this, “You can make a difference.”
    • Send a personalized thank you note, keep it short and creative — the bigger the donation, the more effort you can put into the followup.

Get more tips from Lindsay and other Global Genes contributors in this Global Genes recording of Strategies for Effective Fundraising.

 

“Fundraising is deeply personal, and it’s essential for people to connect with your authenticity and personality. Some of my most successful efforts have come from sharing heartfelt family videos and even lighthearted moments—like our whole family getting mullets for a cure.  Let your story shine!”

 – Amber N. Freed Founder, CEO & Mother SLC6A1 Connect

 

 

Funding Opportunities to Pursue

Going for Grants

One of the more traditional sources of fundraising is applying for a grant. Grants come in all shapes and sizes, but they can often be defined as money given by a public or private funding source or government agency to fund a project or program. You may be able to find grants through sites like grants.gov, but tapping into your network could be more effective. This can mean joining groups on Linkedin or simply reaching out to people in your community and following where those connections lead you. In addition to nationwide grants, there will be opportunities available at more local levels.

Grant writing resources: 

Available grant opportunities:

  • The FDA has published a list of programs and grants available for rare disease research
  • Chan Zuckerberg Initiative 
  • The Orphan Disease Center at U Penn offers several grant opportunities for funds to support rare disease research. 
  • Scientify maintains a list of several open grant applications for rare disease research funds. 
  • The RTW Foundation provides advisory services to rare disease foundations interested in developing therapies and funds drug-discovery projects on ultrarare diseases.  
  • Pharmaceutical companies involved in rare diseases often have a section on their website where you can look for grant opportunities. Often they list who can apply and for what purposes. You might find these opportunities under headings named Grants Portal, Grants & Sponsorships, Corporate Giving, Partners, or Programs & Policies If the website has a search bar, your quickest bet might be putting in keywords like “grant,” “donation,” and “application.”

Fundraisers

You may have certain ideas about what a fundraiser should look like — where it should be held, who should be there — but a fundraiser is really any event that raises money for a cause. Your first step into fundraising could be a big one, like applying for a grant, or a smaller one, like throwing a neighborhood pizza party.  Every effort matters and has the potential to create a ripple effect. Here are some examples of the power you have as an individual to make a difference. 

Tap into what is already going on in your community and what kind of events may be missing!  Brittany Markham, mother of a rare son with ASMD, made a creative float and joined her town’s 4th of July parade with a call attention to a Go Fund Me that she started for her son. She shared her fundraising journey on an episode of Confessions of a Rare Disease Mama podcast.

Markham also realized that her community was missing a kid friendly halloween experience, so she turned her home into a “not so haunted house”. Sharing the creative process and the making of on her social media attracted a larger audience and more donors than could ever have attend the haunted house in person.

Hear more from Brittany and other advocates in this recording:

 

You may be surprised by how many friends-of-friends and even strangers can find your cause through social media and feel compelled to contribute and share. Markham says that being raw with your story will likely draw in more compassion, but you should be aware of how much you are willing to share.

“It’s important to make your fundraising personal, but emphasize the broad impact for those suffering globally from your disease. Videos are an important way to drive home the realities of these horrific conditions and the unmet need, allowing you to connect with donors on a heartfelt level.”

 – Lori Sames, Hannah’s Hope Foundation

 

 

Additional fundraising ideas and resources:

 

Make it an Event

From planning a gala to events as small as a lemonade stand, if you’re not sure how to begin, these resources may help:

Global Genes and Simon’s Searchlight recently published the Event Planning Toolkit. While it is geared toward conference events, many elements will apply to planning other types of large gatherings as well.

There may be events or traditions that you are already a part of that could be used to raise money. Taylor Jensen turned her annual family crawfish boil into a fundraiser to support the Myotonic Dystrophy Foundation. You can hear Taylor’s tips in the Global Genes video: Fundraising Ideas Anyone Can Try.

Create opportunities for your supporters to get more involved. Once you have an understanding of what kind of fundraising works for your cause, you can look to those active members of your community who may be eager to take on a bigger role. Peer-to-peer fundraising can help you pass the torch. Here are some tips on teaching your participants to fundraise. 

 

Leveraging Partnerships

You don’t have to do it alone! Partnering to raise funds can be one of the most effective strategies out there. From working with an organization whose primary goal is supporting rare disease organizations, to teaming up with the makers of your favorite video game, finding the right partner can help build infrastructure, expand reach, and increase the success of your initiative. 

Are there any favorite brands that may align with your organization’s values? Has there been a standout product that has gotten you or your loved ones through hard times? They might be worth reaching out to as a potential partner. 

World of Warcraft made a $2 million donation to CureDuchenne when a documentary highlighted how the game had provided a rich social life to a young player before he passed away from his rare illness. 


“Fundraising for rare diseases is an uphill battle. My advice is to tell your story authentically, but make it engaging for your audience. Build your brand and focus on fundraising activities you enjoy rather than chasing trends or what appears to bring in money. For me, that meant embracing gaming and Mortal Kombat, as my son Raiden is named after the God of Thunder from the franchise. Every effort should have a purpose and a strategy. Connect with your community and make your cause something they want to support.”

– Tommy Pham, Rare Dad, Raiden Science Foundation

 

“My breakthrough came when I realized fundraising isn’t about competition, it’s about collaboration. By partnering with groups who share our mission, we’ve achieved more than we ever could alone: stronger networks, smarter strategies, and faster progress for patients. Now, it’s our superpower!”

– Kelly Trout, BSN, RN, Director, Research and Medical Advocacy International WAGR Syndrome Association

 

There may be some existing medical research programs that aren’t working on your specific disease, but their research could be compatible, and you could become a partner with them rather than trying to start a new program from scratch. Steve Rodberds, Chief Scientific Officer for the Tuberculosis Sclerosis Alliance shares his experience teaming up with the Centers for Disease Control (CDC) to benefit from an existing CDC funded program. TSC is a leading genetic cause of autism, and this became a way for Rodberds to make that connection. 

“Are there any CDC programs that TSC might be able to take advantage of? We know you don’t have specific funding for TSC, but how could we leverage things that you might be doing, and the autism area is one of those ways. Autism has a pretty good financial support from congress at the CDC. So, we’ve talked to them quite a bit about things that might be able to be learned about TSC through their autism program.”

You can hear more about Steve’s partnering strategies in this video:
Funding Sources You May Not Have Heard Of Funding and Collaboration Opportunities

“One of the most common things our team hears from the community is, I am uncomfortable asking for help. So many of these individuals are used to being the givers and the caretakers, and it’s difficult to suddenly have to be the one who needs a hand. Help Hope Live’s decades of experience with medical fundraising have shown us something important: not only is it okay to ask for help when you need it, but it is also a gift to the people who love you when you let them help and give them a clear way to do so. As you prepare to fundraise, team up with people who will support you, uplift you, and remind you that it’s okay to ask.” 

– Sonny Mullen, helphopelive.org

 

Fundraising Platforms
Some fundraising platforms are designed to do more than facilitate collecting funds, they also have tools and staff ready to make your fundraising efforts easier. 

    • Rare Village could be the answer if you are not yet set up as a 501c3 but you are ready to raise funds for a rare disease. Rare Village is an umbrella organization that can act as your fiscal sponsor and allow you to accept tax deductible donations and grants.
    • Help Hope Live: A Trusted Medical Fundraising Platform, If you’re fundraising for an individual with rare disease to cover medical expenses, Help Hope Live can be an attractive alternative to platforms like GoFundMe

 

Individual Donors (Small & Large!)

By learning to be a constant advocate for your cause, you may find that there are potential donors all around you, maybe in places you hadn’t thought to look. Seeking out individuals with a history of making large donations is a great way to go, but don’t overlook those friends-of- friends or even strangers who might feel compelled to make a smaller donation. Those add up!

Don’t underestimate the power of in-person networking. If that feels intimidating, this TEDtalk has some good advice on how to start the conversation with potential donors in real life.

Sharing your story on social media and linking to a crowdsource fundraiser is a great way to reach a larger audience. This could mean creating a fundraiser on platforms like GoFundMe and HelpHopeLive which provide easy links and QR codes. 

In fact putting a QR code on display in a highly visible place (even on your front lawn or your car) can become a low effort way to bring in donations.

A Facebook birthday fundraiser could be another easy and good place to start. This allows you to ask for donations to a cause in lieu of birthday gifts from your friends. Global Genes posted a very short guide on How to Set Up a Facebook Birthday Fundraisier on our Instagram. 

For more advice on using social media to share your story check out our toolkit How To Promote Your Rare Disease Story Through Social Media.

If your website runs on WordPress you can consider adding plugins that make donations easier. These include: GiveWP, Charitable,  and DonorBox. This article, The Best WordPress Donation Plugins, has a list of 9 donation plugins and discusses how to set up your website.

 

Large Donors Resources

    • Have a plan to appeal to legacy donors. Planned giving is when donors allocate a large gift to your organization that you receive after the donor passes away. This article explains how to set up a sustainable legacy giving program and offers tips for effectively communicating with donors about legacy gifts. Legacy Gifts: Taking Your Org’s Strategy to New Heights

In Closing, You’re Now Ready to be Closing

As rare disease advocates, family members, and patients, we know that advocating for your cause can feel like a full time job of asking for help – and it can be hard to make yet another financial “ask” of your supporters. There are people and organizations out there that want to help support you in your journey. We hope that this list of resources will help you feel empowered to seek them out. 

Grassroots efforts can have huge payouts when it comes to both raising funds and creating meaningful connections. Our community is rich with stories of resilience and creativity in the face of hardship. These examples of both tried-and-true and out-of-the-box fundraising are a testament to that dedication and innovation.

Do you have a story of of an unusual fundraising event or campaign success that others might learn from?  Submit your story here for us to consider publishing it.

 

 

A short horizontal rule divider which looks like a genetic scan

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

 

 

Related

Stay Connected

Sign up for updates straight to your inbox.

Sign Up

FacebookTwitterInstagramYoutube