It’s that time — the month leading up to Rare Disease Day. It always falls on the day in February closest to the rarest day on the calendar, February 29. Next year is likely to be a really big celebration, since there will actually be a February 29th (Leap Year Day), but this year it’s still going to be great, even if it’s on the 28th!
You can learn more about the day here, including information on events near you! I strongly encourage you to find an event to participate in, either in-person or virtually. You may be surprised by how much fun it is to get involved, and by how many different ways there are to make a difference!
If you can’t do an in-person event, consider registering for the videocast of Rare Disease Day at the NIH. Don’t be put off by how much time is involved, and don’t worry if you can’t watch it live — you can pop in and out of the event as it’s happening, and they will most likely make the recording available in the future, so you can watch it at your convenience.
If your February is too busy, there’s one more event that I recommend and it’s happening in March. It’s the Rare Disease Symposium at Quinnipiac University, sponsored this year by Connecticut Children’s (but not limited to pediatric issues). You can attend either virtually or in person by registering here.
But if at all possible, I encourage you to make a plan now to do something to celebrate the month. You never know what you might learn! There’s so much great work going on in patient advocacy in general, especially for rare disorders, and I can only cover a very few examples here, and they’re ones I find fascinating, which may not be the same topics you are interested in. Seeing what others are doing for their communities is a great way to open yourself to all the possibilities in patient advocacy. Once you’ve seen what others are doing, you may be inspired to find a way to bring similar work to the chronic hypophosphatemia community. Maybe you’ll even be inspired enough by a potential project that you’ll be the one to bring it to our community! We need more people getting involved, learning what’s possible, and offering both their ideas and their energy to patient advocacy, so our community doesn’t stagnate due to lack of vision.
***
Please note that the author is a well-read patient, not a doctor, and is not offering medical or legal advice.
If you’d prefer to read this blog as a newsletter, sent straight to your inbox, please sign up here.