Why it’s so important to bring awareness to Rare Diseases, and not just for Rare Disease Day.
Over 6000 rare diseases and less then 10% with a cure and most of them effecting our children. Ending their lives in terrible ways before they even get a chance to live.
We are doing what we can to make a small change in that world and hope that you will help. Remember to share our website and follow us on Instagram and Facebook.
We got the best surprise from Josef’s childcare centre. Without any prompting they decided to bring awareness to Rare Disease day and made sure everyone wore their stripes!!
All the parents sent their kids wearing black and white and I hope they see this post and know how much it means to us. Our community continues to rally around us and without that support we would not be able to get through the tough days.
We sometimes forget that Josef is a kid with a rare disease too and it’s not just his sister, I hope that we get to do that a little bit longer.