In the United States, a disease is considered rare if affects fewer than 200,000 people at any given time. Though that number may seem low there are at least 7,000 classified rare diseases causing a tremendous amount of grief, pain, and suffering for approximately 350 million people globally.

Many hurdles exist in the rare disease community, but the largest setback for progress lies in the numbers. While commonly lumped together under the rare disease umbrella each one of the 7,000 diseases is unique. Individually, these diseases affect a smaller number of people compared to more common illnesses, which complicates financial allocation towards organization operation, patient assistance, and research. All these factors lead to tremendous value on each dollar raised.

How can your rare disease organization compete in such a saturated market? Stand apart by reading the tips below.


There are hundreds of awareness days that take place annually. Aligning your organization with one could grow your audience and heighten your platform. For the rare disease community, Rare Disease Day (February 28) provides an opportunity to improve medical representation for individuals with rare diseases by garnering the attention of legislators, donors and the media.

Individually, organizations and advocacy groups supporting rare cancers like mesothelioma or rare autoimmune disorders like Addison’s disease may feel as though their place at the table is small. Rare Disease Day brings the entire rare disease community together, allowing smaller groups to make a larger impact.


Without finding ways to optimize social media, organizations are missing out – especially for rare disease groups already working in the confines of a small audience. National awareness days provide the perfect opportunity to have a voice in a larger conversation and grow your audience.


Tweet chats can generate powerful conversations between an organization and their audience. If unfamiliar with the term, tweet chats are discussions held via Twitter led by a designated moderator who asks questions during a predetermined time frame.

Just like an event, a tweet chat is set up by setting a time and date, picking a specific topic, then promoting it to your audience.

For example, the National Organization for Rare Disorders (NORD) will be holding a live tweet chat with the Dr. Phillip Pearl of Boston Children’s Hospital and Ashanthi De Silva, Rare Disease Editor for The Mighty. Join a conversation through your organization’s Twitter or start your own tweet chat. Tweet chats can help to make connections within the non-profit space and build your audience.


Hashtags help make several voices become one. The official hashtags for Rare Disease Day are #ShowYourRare and #RareDiseaseDay – encouraging individuals to share their story. Hashtags are now compatible with Twitter, Instagram and Facebook.

Rare Disease UK is raising awareness by utilizing hashtags and encouraging followers to post in an Instagram Photo Challenge.


In addition to raising awareness, online campaigns can also aid in raising funds. For example, NORD has launched a new virtual campaign asking participants seek pledges from friends, family or co-workers to walk, run or bike 7,000 miles collectively.

Proceeds from the campaign benefit NORD programs including research, patient assistance and advocacy.


Events are tried and true ways to fundraise, especially when tied to an overarching awareness day. From galas, to runs or walks – there is an event for every organization and the community they serve.

If your goal is to raise awareness within the media, local government and community leaders – perhaps a Rare Disease Day luncheon or gala would be most effective. Or, if your organization is looking to raise awareness for children affected by rare disease and their families, then consider hosting a superhero themed movie night.

Having trouble coming up with the perfect event? NORD has compiled an A-Z list of fundraising ideas.

Make sure to send out press releases prior to the event date, and don’t forget to use your social media channels to share pictures, videos, and testimonials throughout the event. For the purposes of sharing content with your audience, come up with a hashtag for the event. Using it in conjunction with an already established one, like #RareDiseaseDay, will help to grow your audience.


As donors are looking to support your organization, remind them that their employers may double or even triple their donation. Research suggests that approximately $10 billion of corporate matching gift money goes unclaimed annually, which represents about $20 billion to nonprofits. Approximately 1 in 10 gifts to nonprofits can be matched. That’s a staggering 10% of total donations!

HEPdata has been the leader of providing over 7,000 non-profits with matching gift information for over 20 years. They maintain a database of over 23,000 companies that match employee donations to non-profits. The HEPdata E-Match Donor Link is a great tool to add to your web site and on-line giving page. This tool will allow your donor to instantly see if their gift is match eligible. For example, the American Brain Tumor Association uses HEPdata’s matching gift link on their web site. Click here to see how it works

Here are several ways you can promote matching gifts for your organization:

Promote Matching Gifts on Your Web Site:
You can promote matching gifts on your online donation page, and under a separate ways of giving matching gift tab.

Include a reminder about matching gifts in thank you letter and gift receipt: Thank you so much for your generous support to (insert non-profit name). We think you may work at a company that has a matching gift program. You can take advantage of this great benefit by contacting your human resources department or by visiting (insert HEPdata E-match link).

Add a sentence about matching gifts under your signature:
Please consider doubling the impact of your gift. Your donation may be eligible for a matching gift from employer. Find out when you give to (insert nonprofit name) at < insert E-Match Donor Link >.

Through Social Media:
Include promotion of matching gifts in all social media – twitter, Facebook, Instagram. This is a quick and easy way to share success stories and remind people of matching gifts.

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For more information on matching gifts, please contact HEPdata at or call 800-681-4438. The HEPdata team would be happy to assist you in maximizing your matching gift revenue. Also, check out their Learning Center where you can view over 50 free, on-demand educational webinars by leaders in philanthropy, covering best practice on various fundraising topics. You can also find a weekly blog that provides useful fundraising tips.