February 28th is Rare Disease Day! A day where the those of us in the rare disease community come together to raise awareness about rare diseases and how they impact people’s lives, including our own.
This is such an important thing to do because the majority of rare diseases go years undiagnosed, have very little research, usually have no cure and very minimal approved management options. Raising awareness helps to educate others on these types of diseases and why they need attention while also encouraging researchers, policy makers and medical professionals to address the needs of those living with rare diseases.
We here at The Chronic Collective know how important Rare Disease Day is so we came up with a list of 6 ways that you can get involved!
1 – Post On Social Media
Sharing and posting on social media is such an easy, free and fun way to get involved in Rare Disease Day!
One idea would be to share photos or videos of your rare disease journey and share about what having a rare disease has been like for you. Another idea could be to share rare disease statistics to help educate others on how many people really do have rare diseases and the impact that has on them, their loved ones, our healthcare system, our economy etc.
Remember, most people don’t think about rare diseases unless they have one themselves or know someone that has one, so more than likely they don’t realize it’s Rare Disease Day. By you sharing about it, not only are you making them aware of rare diseases in general, but also making it personal for them now because they know and care about you, thus they now care about rare diseases.
It’s also a great way to connect with the rare disease community! By adding the hashtag #rarediseaseday on your posts, you can connect with other people with rare diseases more easily online!
2 – WEAR RARE DISEASE APPAREL
This one is simple, wear rare disease apparel! This could be something that explicitly says rare disease on it or could be apparel with your specific rare disease on it. Both are sure to spark conversation with others as you go about your day! It’s an easy way for friends, family and even strangers to ask about it and learn more! There may even be people you pass during the day that see your clothing and end up looking up the disease later or looking into rare diseases because they saw you wearing it. You never know the impact that could have! It is so simple and yet so incredibly powerful.
We have a whole Rare Disease Collection you can look through to find options just for you!
3 – SHARE YOUR STORY
Sharing your story is powerful. It’s important. It’s also important to do it when you are ready and in a way that is comfortable for you.
Some ways you can share your story could be:
- On social media
- Sharing it with a friend or family member 1:1
- Writing it out in a blog post
- Creating a Youtube video
It’s really all about doing it how and when you want.
At The Chronic Collective, we also offer a way to share your story easily on our platform! You can fill out a quick survey, share a photo of yourself in your Chronic Collective apparel and we will share it with the rest of the collective on our instagram page!
4 – HOLD AN EVENT
If you are able, you could plan a Rare Disease Day event! This is a great way for those with rare diseases and those without to feel really involved in Rare Disease Day!
You can organize an event on Rare Disease Day or during or around the month Februaury.
This could be in the form of:
- Holding an art, photography or essay writing competition
- Organizing a walk or march
- Having an in person fundraiser
- Organizing a rare disease patient get together
- Creating an online or virtual event
Honestly, the options are endless here!
Be sure to snap some pics in your Chronic Collective apparel and tag us and we can share it on our page as well!
5 – CONTACT THE PRESS
This is a great time to reach out to your local or regional newspapers, radio shows, news stations etc. to get coverage of Rare Disease Day! You can do this by sending out a press release to the media outlets in your area sharing about Rare Disease Day, the statistic and your story if you feel comfortable! If you end up holding an event or fundraiser, this is a great place to promote that too!
We have some great pieces you can wear to your interview too that are professional, cute and still accomplish the goal of representing your rare disease!
6 – CONTACT POLICY MAKERS
Legislation surrounding rare diseases is so important. It’s can really help you or really hurt you. That’s why it is imperative that those of us in the community advocate for legislation we believe is beneficial for not only ourselves, but the rare disease community as a whole.
You can do this by writing a letter, calling or having a meeting with important policy makers talking about the issues the rare disease community faces and what legislation could help or hurt the community. It is in these interactions that policy makers learn to put a face and someone’s real lived experience to the actual policy and that can really impact them and what they fight for.
Rare Disease Day is such an important awareness and advocacy day for the rare disease community. It’s our hope that these 6 ideas of how you can get involved on Rare Disease Day help to inspire you to jump in and help to raise awareness for the rare disease community so that we can all make a difference!
Reader Interactions