A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Thursday, March 1, 2018

Another Rare Disease Day is done

Usually I post quite a few items related to Rare Disease Day, held on the last day of February.

I obviously didn't this year.  It wasn't for lack of wanting, it was for lack of knowing what to write.

One year I focused on those with Niemann-Pick Disease.  Another year, I focused on a bunch of rare diseases.  I've even included a list of some of the rare disease statistics.  Some of these articles are still some of my most popular.

Other than losing quite a few of the people I featured, not much has changed in the rare disease world.  I've been blogging for about 6 years, and not much has changed. Yes, there are now some treatments and some clinical trials for some of these rare diseases.  Yes, awareness has increased.

Rare Disease isn't just an awareness campaign once a year - it is a daily struggle for so many.  And so many are dealing with ultra rare conditions, they don't have a name yet.

The 2018 theme was Show Your Rare, Show You Care.  We all need to be a bit more caring to others, no matter if they have a rate disease or not.