I'm fairly new to this diagnosis with my child but i have found this group to be extremely helpful and comforting with my million questions and letting me cry on there shoulders. The board members have reached out to me and sent me so much information, they even sent a book for my child to read to her class about her illness. I can't wait to meet some of them in person at the next group outing.
I have been receiving support from this foundation for many years. The family support is unmatched. The support page on Facebook has been instrumental in helping me and many many others. During times of crisis, we have gotten personal messages from so many - helping us to know we are not alone on this rare disease journey. The Foundation's dedication to family support and research is and has been historically, unmatched by any. I encourage all to support the Shwachman-Diamond Syndrome Foundation!
My child recently was diagnosed with sds. While I Google it I came up with sdsf. The group of women and men that I spoke to have been extremely helpful. They were able to find me a local dr that specializes in this rare illness. Several of them had messaged me at my lowest point to make sure I'm not alone. Thanking them alone is not enough, I pray that they can continue to work to find a cure