According to the National Institutes of Health, "There are more than 10,000 known rare diseases and only a few hundred have safe, effective treatments. In the United States, rare diseases affect about 1 in 10 people."

This rarity leads to limited funding sources. For example, only 4% of funding from the National Cancer Institute goes toward pediatric cancer research, and the majority of that is for two of the most common childhood cancers—leukemia and lymphoma—which also have the highest survivor rates. It's underfunded precisely because childhood cancer is considered rare, making up between 1% and 3% of all cancers diagnosed in the U.S.

Because all pediatric cancers are considered rare and because there can be dozens of subtypes of pediatric cancer, developing treatments and finding enough patients to participate in clinical trials is also extremely difficult. This is true for other types of rare diseases as well. But research has shown that funding for clinical trials is effective. According to a report from the Children’s Oncology Group (COG), at one point, children diagnosed with acute lymphoblastic leukemia (ALL) only survived an average of six months, but now, due to over 50 years of research and consistent funding for it, the cure rate is 85%.

While the numbers may seem daunting, there is hope, and finding practical solutions for nonprofits working to raise awareness for and fund rare causes is doable. At ISF, we have identified four key solutions.

Collaboration Fostering
Collaboration and communication between families fighting similar diseases, researchers, healthcare professionals and advocacy groups is vitally important in finding cures for rare diseases. While it is natural for a family to want to start a foundation to accelerate research, the benefit of combining resources and energy can often accelerate that impact even further. The reason the cure rates for leukemia and lymphoma are so high is because one main organization—the Leukemia & Lymphoma Society—has organized funding and families around its cause.

Diversification Of Funding Sources
As an organization that desires to grow sustainably over time, it is important to advance partnerships with businesses and research organizations to diversify funding options. Along with crowdfunding campaigns, establishing a strong tie with your local community through fundraising initiatives helps mobilize public support. It also creates educational opportunities to help people learn more about the causes you are championing. In addition, we have found that establishing an internal champion at large institutions helps further our work and often leads to asking that individual to serve on the board or lead an initiative.

Awareness Campaigns
Since many rare diseases aren’t well-known by the general public, creating awareness campaigns is a great way to raise support for your cause. You can do this by connecting with influential people to be brand ambassadors, utilizing social media and telling powerful stories of impact. We’ve found that storytelling and simplifying our message helps unite more people to our cause, even if they don’t have a direct connection to cancer or a rare disease.

Engaging The Public
It’s important to build a strong volunteer base. Expanding support beyond those impacted by your cause creates solidarity for the individuals and families facing the challenges of their disease.

Read the full article about funding rare causes by Erin Santos-Primis at Forbes.