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Rare Disease Day

Rare Disease Day

Guest Blogger: Anna Suarez, Communications Specialist | MAAC

Rare Disease Day has arrived! On the last day in February the rare disease community can come together to raise awareness and share some common struggles and hopes for the future.

Why do rare diseases matter?

When considering the group as a whole, the rare disease community in America totals 30 million people, which is more people than those that have HIV, heart disease, or stroke. Despite impacting a large group of people, rare diseases don’t often get the attention they need and deserve. With over 7,000 unique rare diseases, the community is normally broken up into distinct categories or by specific disease. This is why when we’re given the opportunity to work together, everyone from the rare disease community should get involved however they can!

One of the common struggles for those with rare diseases is that they are misdiagnosed or even remain undiagnosed. Even after diagnosis, people with rare diseases face many challenges. They don’t have the widespread recognition or support resources that are available for more common illnesses. A lack of treatment options is another issue, but there is some hope on the horizon. In 2015, 47% of all new drugs approved by the FDA were designated specifically for rare diseases. One great example of this is the immunotherapy drug keytruda that has been approved for the treatment of melanoma, non-small cell lung cancer, and now is being studied as a possible treatment for a rare cancer called mesothelioma. These new drugs and treatment options are a breath of fresh air, especially when you consider that 95% of rare diseases don’t have FDA approved treatment options, and even for the remaining the 5% treatments are largely inaccessible due to high costs. Because rare diseases often have few options for treatment options along with the aggressive nature of some rare diseases, which often results in a poor prognosis for patients. Hopefully the development of better treatments will lead to longer life expectancy and improved quality of life. New drugs and treatment options can be a beacon of hope for patients battling these diseases.

But it’s not just medical advancements that can bring hope to patients. Even having a holiday where patients can be recognized at a national level and feel a part of the larger community can have a huge impact on morale. Rare Disease Day helps show patients that they haven’t been forgotten and reminds them that there are people out there who can share in their experiences and offer support.

What can we do to help raise awareness?

Since Rare Disease Day is so essential for our community, it’s important to talk about how to get involved! Awareness holidays can really to help bring more attention to issues facing the rare disease community and to show patients that they are not alone.

Being able to raise awareness is what this holiday is all about, and one of the best ways to do this is through social media! Oh February 28th you can tell your story online and include “#RareDiseaseDay” to join the campaign. Sharing how rare diseases have affected your life, or the life of someone you care about, adds a personal touch that you don’t get from sharing data and statistics alone.

And of course staying involved even after Rare Disease Day has passed is important as well. Volunteering is a great way to get involved and support an organization you care about. Continuing to share on social media, blog posts, or in your everyday life can all help advocate for rare diseases as well. You can also stay politically engaged and talk to your representatives about federal funding for development of better treatments. All of these activities have a real impact and can help support patients.

Rare disease day action steps

Rare Disease Day is one of the few occasions each year when these conditions are given the attention they deserve. Let’s celebrate it properly and help raise awareness for our community!