Rare Disease Day: How You Can Help Raise Awareness

Rare Disease Day takes place on the last day of February.

The worldwide event has gained a lot of traction since its inception in 2008. The main objective is to raise awareness of the impact rare diseases have on patient’s lives.

There is a tagline being used for the 2018 Rare Disease Day that is uniting people living with a rare disease: Show your rare. The goal is to help show people that patients, researchers, advocates and doctors are stronger together and can collectively raise awareness for multiple rare diseases that are often mistreated and misdiagnosed.

Idiopathic pulmonary fibrosis (IPF) is considered a rare disease. IPF is a progressive and fatal lung disease that does not discriminate. It typically impacts an aging population, however there are anomalies, including some teenagers and young adults.

Rare Disease Day is important for the patients who are diagnosed with this disease and their friends and loved ones. It’s important to highlight the impact of the disease, and to spread awareness so that others know the early signs and symptoms of rare diseases and can get the proper treatment.

So how can you help raise awareness for Rare Disease Day 2018? Here are some tips:

Use a hashtag
On your personal social media pages, consider using a hashtag that connects all the posts about Rare Disease Day. This shows just how many people are impacted by rare diseases and is an easy way to tie the conversation together. Want to make an even bigger impact? Talk to your employer and ask that they post something for Rare Disease Day, reaching an even bigger audience. Some of the hashtags that will be trending this year are: #showyourrare #RareDiseaseDay2018 #rarediseasesmatter #iamrare

Get competitive.
Challenge your friends, family members and colleagues to a friendly competition. Since a rare disease impacts not only the patient, but their networks as well, people will most likely want to join you if you ask for their help in raising awareness. Consider donating the proceeds to an appropriate foundation or non-profit associated with your disease.

Create a video.
This video can be long or short, and does not need to be professionally made. The goal can simply be to help others understand what you’re living with on a daily basis as a result of your rare disease. It can also be a call to action: Consider challenging people to do something in support of your illness. Some of you may remember the Ice Bucket Challenge that circulated on social media a couple of years ago, which ended up having a huge impact on the research being conducted on ALS.

Design swag highlighting your cause.
This could include bags, T-shirts, water bottles and other everyday items that are branded with an awareness ribbon or catchy slogan that might provoke questions about your disease. These could be sold to raise funds, or they could be conversation-starters about the rare disease you might be living with.

The possibilities of raising awareness for Rare Disease Day 2018 are endless, and just might take a bit of creativity. Please consider joining this movement on Wednesday, February 28 and help bring the awareness to rare diseases that patients and their family members deserve.

Have you been a part of any super successful awareness campaigns? Please share! 

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