4 Ways To Spread Awareness For Rare Diseases

Over 6,000 rare diseases currently exist on our planet. These illnesses, otherwise known as orphan diseases, are classified as rare when they affect fewer than 200,000 people at any given time. Some of these illnesses are genetic while others can be caused by a number of organic or environmental issues. Unfortunately, due to the exclusive nature, and unpopularity, of these diseases and cancers, they are often underfunded, leaving a gap in the progress of finding a cure.

Luckily, every February, on the last day of the month, we celebrate and recognize Rare Disease Day, an event honoring this small, yet strong, community and the individual battles they conquer each and every day. There are a few steps we can take to help move towards finding cures for these orphan diseases. Fundraising is clearly an important way to help, as many rare illnesses receive far less funding than those impacting larger communities. However, the more critical step to take towards a cure is through education and raising overall awareness. Here are four meaningful ways to do just that.

1. Social Media

We as a society are constantly on the go, and social media is right there with us. Leveraging different social channels is a great way to reach a wide audience in a timely manner. Facebook, Instagram and Twitter reach billions of users monthly. Creating awareness pages, using hashtags to grow metrics and having live tweet chats are all effective ways to engage people from every demographic and throughout the world. When it comes to rare diseases and social media, leveraging user-generated survivor stories helps organizations gain an emotional appeal for their particular cause; something far more impactful than any combination of statistics.

2. Create A Challenge

In 2014, we saw the power of one small challenge when the ALS, or amyotrophic lateral sclerosis, Ice Bucket Challenge was introduced to the world. In less than two months 17 million people dumped buckets of icy cold water over their heads and roughly 2.5 million people donated more than 115 million dollars for research.

Other simple, yet effective ways to raise awareness and host fundraisers include things like:

• A local walk/run where all proceeds are donated to the disease in mind.
• A polar bear plunge where participants gather sponsors for the big dive and afterwards warm up with blankets and hot beverages.
• A chili cook off where you can make a fun afternoon of friendly competition in your workplace or neighborhood.
• Classic fundraising bracelets, originally created from the Livestrong Campaign, and have now become a great way for people to grow and show awareness every day, all year long.

3. Awareness Days

Aside from Rare Disease Day, nowadays most illnesses have a community that promotes a specific day in their honor. For example, September 26 is a day to recognize the mesothelioma cancer community during Mesothelioma Awareness Day (widely known as MAD). This rare cancer affects 3,000 people in the United States each year and may appear after being exposed to the deadly toxin, asbestos. Prognosis is very poor with the average life expectancy of less than one year after a diagnosis. Mesothelioma remains one of the few cancers that is completely preventable and awareness campaigns like this provide great information on prevention.  

Another example is Cystic Fibrosis, which is recognized throughout the entire month of May. This is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. The month of May is recognized as a time to raise awareness through a number of efforts for the 30,000 adults and children in the United States alone who have been diagnosed with this terrible disease.

4. Become An Advocate

Becoming an advocate is something you can do on behalf of the rare disease community. Those who want to volunteer or give their time and voice to a disease they have a passion for now have a variety of platforms to share their journey within the broader ecosystem. Advocacy comes in many forms, from donations to a loud voice. There is no right or wrong way to care. Depending on your personal connection to a cause, never be afraid to take action at events: stand with signs or recruit petition signatures that will go to congress or local legislation. The more voices there are, the sooner these diseases will be noticed by community leaders. If you’re interested in finding more information about becoming a rare disease advocate check out this information supplied by NORD (National Organizations Rare Disorders).

This February 28, take action. Do your part (big or small) to give this broad community the recognition it deserves, but may not be able to fight for!