Explorez les groupes et les posts ci-dessous.
Ce post provient d'un groupe suggéré
Hello, I just found this site and group. I have a 9 year daughter with late on set FARS2 Deficiency. We live in Florida, USA. I have yet to connect with others with this genetic defect so I am was excited to see this group exist. Thanks for setting this up. I am curious to know about you or your loved one and where you are from if you are willing to share.
Ce post provient d'un groupe suggéré
My 10 year old adopted son was diagnosed using whole exome with REEP1 variant. I am so happy to find this group! Please keep sharing!
Ce post provient d'un groupe suggéré
Ce post provient d'un groupe suggéré
Welcome Ole Ralph , great to have you join us here.
Ce post provient d'un groupe suggéré
Welcome, Nasly!
Ce post provient d'un groupe suggéré
Ce post provient d'un groupe suggéré
Ce post provient d'un groupe suggéré
Thanks for joining, Nasly and Dario!
Ce post provient d'un groupe suggéré
@naslyrr and Dario, we're very glad you found us. Im sure you'll make some new friends and learn about the disease. Thanks for sharing the photo.
Hi All, So happy to see these replies. Greetings from Ireland. We have a five year old boy. I am the carrier so awaiting neurologist appointment in July. Same therapies AFO’s physio night time cast for right leg only. Hard at the moment with AFOs as to why I can’t do what other kids do and the AFOs are heavy and awkward.