How to Support Rare Disease Day

What is Rare Disease Day?

Rare Disease Day began in 2008, with the intent to support people and families living with a rare disease. A major goal of this day is to raise awareness amongst the general public in order to encourage scientists and decision makers to affect change and address the needs of those living with rare diseases. Today, one in twenty people worldwide will live with a rare disease! Not only is that a significant number, but many of the rare diseases currently have no cures and some go undiagnosed.

After partnering with clients who are developing therapies for those living with rare diseases, we’ve thought through many communications plans outlining how to support patients, companies and caregivers on this awareness day. Below are a few suggestions on how you can support Rare Disease day on February 28.

Raise Awareness Using Social Media 

Social media is an interactive virtual community that allows both companies and patients to be heard and gives them the tools to make a difference. With this in mind, it’s important to use social media to spread awareness of Rare Disease Day in general along with specific initiatives or goals for a company.  Social media posts should use the hashtags #ShowYourStripes and #RareDiseaseDay. These hashtags will include the company post amongst other social users showing support for Rare Disease Day and potentially increase your post’s engagement.

Another way to leverage these hashtags, is to follow others using the same ones, connect with these users also posting on this matter, and engage in conversations about rare diseases.

Lastly, one of the most impactful strategies we can use to promote Rare Disease Day is to share personal stories from patients describing their experiences living with their disease. Not only will this give our followers the chance to learn more on a disease through a different perspective, but it will also bring attention to patients themselves and celebrate them for their immense courage and strength.

Advocacy Groups

A great way to educate ourselves on the medical unmet needs rare disease patients face is to interact with various rare disease advocacy groups. For instance, the National Organization for Rare Disorders (NORD) is a great organization to get more information on the current needs for people living with rare diseases. Advocacy groups such as NORD bring to light personal stories and share what these individuals go through daily.

They also provide ways for viewers to get involved and help the cause, whether it be by participating in virtual events (under current circumstances), donating to various charities, or learning more about the disease to help educate others.

One way to stay up to date with any rare disease related news is to either become a member of an organization or follow advocacy groups on social media channels. It’s important for companies and individuals to use the resources they have available to spread the word about the impact of various rare diseases.

Get Involved

One of the main objectives of Rare Disease Day is to encourage policy makers, public authorities, industry representatives, researchers, health professionals and others to focus their efforts on addressing the needs of people living with rare diseases.

As healthcare communicators, we have the opportunity to motivate our rare disease clients to highlight their pipelines and team members with expertise in rare diseases. For instance, we encourage these clients to host panels showcasing their programs to keep patients and industry professionals up to date with any advancements on the companies’ therapy. These types of events are intended to be hosted by the companies’ rare disease specialists to provide additional knowledge on the disease and answer any questions patients or industry professionals may have.

On top of hosting panels, we also encourage clients to plan in-house events to get their colleagues together and support Rare Disease. To sum it up it, there are multiple initiatives and strategies we present to our clients who are working towards treating a rare disease, so they have the option to offer more support to their patient populations and get involved!

Although I do not have a rare disease myself, living with type one diabetes since the age of 18 months has made me more sensitive to other medical challenges people are faced with. Like type one diabetes, most rare diseases currently have no cure. By spreading the word on Rare Disease Day, we hope to encourage organizations and scientists to develop therapies and find cures for the many rare diseases with no treatment options. For our clients already working towards treating a rare disease, we truly admire and appreciate their dedication towards improving the lives of rare disease patients and we will continue to leverage our expertise to help them achieve their goals. It is up to us to make a difference. Join me in supporting Rare Disease Day!

Graphic created by: Autumn Von Plinsky