Despite their classification, rare diseases aren’t so rare. Individually, these diseases impact a small number of people compared to more common illnesses. Collectively though, there are approximately 7,000 rare diseases causing a tremendous amount of suffering for 350 million people globally.

The big hurdle for rare diseases exists in the individual numbers. Since each specific rare disease affects a smaller number of people, research and financial allocation are relatively low – making each fundraising dollar tremendously valuable. These funds go towards organization operations and research.

Most patients of rare disease face little to no options for treatment. For some rare diseases like mesothelioma, aggressive cancer caused by asbestos, scientists are on the verge of breakthroughs. However, much more funding and research is needed before every patient has an opportunity to find relief.    

As a smaller organization in need of donations, how can you stand apart in the eyes of an overstimulated public? Read the tips below for ideas!

1. Align Efforts with a National Awareness Day

National awareness days provide a platform for smaller organizations to have a voice. For rare disease groups, Rare Disease Day is the biggest day of the year. On the last day of February, advocacy groups of the nearly 7,000 classified rare diseases hold awareness activities worldwide. The goal – build awareness with legislators, media, and the general public while raising funds for research.

Utilizing an awareness day specific to your cause, like Rare Disease Day, can help to provide a platform for smaller organizations whose messages often get lost in a saturated market. The best way to utilize an awareness day is by hosting an event and being social!

Rare Disease Organizations

2. Host an Event

Hosting an event is a classic but impactful way to start conversations about your cause. Events can range from galas to run/walks, or even a family friendly game night!

For example, the National Organization for Rare Disorders (NORD) hosted a State House Event in Pennsylvania on Rare Disease Day. At the event, community members with rare diseases and their families held a luncheon press conference. The event enabled them to gain the attention of Pennsylvania legislators, media, and the general public to highlight the challenges they face daily.

Meanwhile, nonprofit Heroic Inner Kids held a costume dinner to raise awareness for Rare Disease Day. Since fifty percent of those with rare disorders are children, this event appealed to a large audience and provided a unique and powerful way for kids involved to use costumes, comics, and superheroes to help overcome their challenges.

For maximum coverage, write a press release about your event and send it to local media outlets! The earlier a press release is sent out the better. Be sure to follow up with media contacts a week prior to the event.

Hosting an event online is really easy with GiveGab:

3. Be Social

Wouldn’t it be nice if all social media campaigns went as viral as the ALS Ice Bucket Challenge? In just a couple months, the challenge raised $115 million for the ALS Association which funds research and services for those living with Lou Gehrig’s disease.

But, social media isn’t just for viral videos! 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.

Rare Disease Day is the perfect opportunity to connect with your already established audience while making new connections by joining bigger conversations. For instance, the National Organization for Rare Disorders (NORD) will be holding a live TweetChat with the Chief of ABC News Medical Unit. Joining in on the conversation through your organization’s Twitter will help to network, make connections and grow your audience!

To enable the sharing of stories and connection, use a hashtag! The official hashtag for Rare Disease Day is #ShowYourRare. On Twitter, organizations along with advocacy groups and individuals with rare diseases are using it to join in on one big conversation.

Social media also helps to facilitate virtual campaigns. The 7,000 Mile Rare Movement is a new campaign hosted by NORD that builds up to Rare Disease Day. The campaign encourages the public to seek pledge dollars to walk, run or bike 7,000 miles collectively in February.

There are thousands of companies and organizations fighting for the attention of donors and consumers. Increase awareness and funds for your charity or nonprofit by aligning with an awareness day and joining a bigger conversation!

How will you #ShowYourRare this Rare Disease Day?


This guest article was provided by Emily Walsh, Community Outreach Director for the Mesothelioma Cancer Alliance.

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