I am Sadie Rae, I have Sanfilippo Syndrome.
- heathermason
- Feb 7, 2024
- 1 min read
We are already one week into our rare disease awareness initiative! Today, we are sharing Sadie Rae's story. This heart-breaking story is another example highlighting the need for greater flexibility in regulatory processes to develop treatments for rare diseases. Sadie Rae was doing very well on her treatment until........no one picked up the baton to enable her to continue!
Read more about this wonderful joyous little girl.
Please share her story, it may just help one person looking for answers. Be part of someone's solution.
I’m so grateful for the children and adults that are getting the opportunity to get some much needed and deserved attention. These people deserve ALL the help and attention they can get to live a fulfilling life. They are beyond beautiful souls just like you and me. God bless everyone of them.🙏😇💜