by Andrew Stuart | Mar 25, 2018 | Stories
Cara Larson celebrates Rare Disease Awareness day by sharing her story in her local paper. Please click on the link below to read her story....
by Andrew Stuart | Mar 25, 2018 | Research
If you are interested in participating in the study being completed by Dr. Livia Garavelli in Italy on C-2/C-3 vertebrae fusion in WSS patients, please download the 4 files below (instructions, purpose of the study, a medical history, and consent). Dr. Garavelli also...
by Andrew Stuart | Mar 24, 2018 | Stories
The city of Jasper, Alabama, recently issued a proclamation declaring February 28 – March 7 as Rare Disease Week in the city. Local children who have been diagnosed with rare diseases were invited to attend a presentation at City Hall. On hand to receive the...
by Andrew Stuart | Mar 24, 2018 | Stories
By: Candace, mother of Gus (age 3) Gus was diagnosed with Wiedemann-Steiner syndrome in July 2017, just shy of his 3rd birthday. Here is our story… “Please don’t shoot the messenger, but…can we talk?” I will never forget this day. Gus was...
by Andrew Stuart | Mar 6, 2018 | Stories
A local broadcast news station ran a story on a family in the WSS community. Watch it here....