What Is the Impact of Rare Disease Awareness Days?
January marks the awareness day for one of my rare diseases, Moebius syndrome. Awareness is sometimes a funny concept when it comes to rare diseases: there are over 7,000 identified rare diseases and many more undiagnosed individuals who undoubtedly have a rare disease.
A person cannot possibly know all 7,000, so I cannot fault them for not knowing the specifics of my specific rare disease. So then what? What are we after when we celebrate an awareness day?
I find that a lack of understanding about rare diseases, in both the medical and non-medical contexts, is one of the greatest barriers I face as a rare disease patient. Understanding means that we exist, we have a lot of knowledge about our individual rare diseases, and that we can be a resource.
The rare disease community isn't perfect. Sometimes, I feel like my relationship within multiple communities is entirely too complicated to deal with on a regular basis due to history and back story, but the power of uniting on one day for one common purpose is powerful.
My community has get-togethers of local families, parents share to their children's schools, people reach out to local news media, and articles are published. Even if the awareness being spread is an internal community reminder that we are here, it can be powerful.
Honestly, I struggle with this sometimes. We could use awareness days as much to remind everyone to be kind and understanding of everyone else as much as to educate about our specific unique conditions. A mission to raise awareness of our unique condition is powerful for us as individuals.
Rare diseases cost money. It costs more to be disabled or raise a disabled child in all kinds of ways. A specific day helps mobilize fundraising efforts for patient assistance programs, family conferences, and research into causes (the cause of my rare disease is still unknown), treatments, and quality of life for individuals living with a rare disease.
It's valuable to share your rare disease story, even while acknowledging that it might be lost in the shuffle of everything else we are inundated with in our lives. You never know when that spark of recognition will come, and someone will recognize themselves or a family member in that rare disease story, and a diagnosis will be made, or a connection will be formed.
The knowledge gained on a rare disease awareness day is not so much about the specifics of any individual rare diseases, but it's that rare diseases exist and that there are communities for so many of them.
Why rare disease communities unite on awareness days
This year, on our awareness day, we will gather, reconnect, mobilize, and work together for common goals. Sometimes it's weird, being in a community where you're unified by one tiny part of yourself. But on Awareness Day, we unite in awareness and advocacy for ourselves and our rare disease communities. We raise awareness for ourselves as much as we raise awareness for others.
Do you observe an awareness day for your rare disease? What do you do? What do others in your community do? Share with us in the comments below!
Have you taken our Rare Disease In America Survey yet?