Joubert Syndrome and Related Disorders Foundation
The Joubert Syndrome and Related Disorders Foundation is an AWESOME resource to all patients, family and friends affected by Joubert Syndrome. This Foundation was formed in 1992 by PARENTS, and has continued to be run by an international network of parents seeking to help one another as they journey together with a rare diagnosis. How awesome is that?
Personally, I have been so blessed to connect with an awesome network of parents through this Foundation. When you're dealing with a rare diagnosis, the parents become the experts, and these parents are the most valuable resource we have! If you are a volunteer member of this foundation, or one of the parents that steps in at any hour of the day or night to offer words of advice, encouragement, or to share personal experiences, please accept my sincere THANK YOU for the time, hard work, and love that you share in order to help out the rest of us.
I was so fortunate to connect with a group of parents immediately after Ryker's diagnosis, and their words brought me peace when all we were facing was unknowns. They will never know how much they impacted me during those first few months of learning about Joubert Syndrome and the road we would soon be traveling.
If you're looking to give financial support to any organization, I urge you to consider donating to the Joubert Syndrome and Related Disorders Foundation. Trust me, it's worth it!
Personally, I have been so blessed to connect with an awesome network of parents through this Foundation. When you're dealing with a rare diagnosis, the parents become the experts, and these parents are the most valuable resource we have! If you are a volunteer member of this foundation, or one of the parents that steps in at any hour of the day or night to offer words of advice, encouragement, or to share personal experiences, please accept my sincere THANK YOU for the time, hard work, and love that you share in order to help out the rest of us.
I was so fortunate to connect with a group of parents immediately after Ryker's diagnosis, and their words brought me peace when all we were facing was unknowns. They will never know how much they impacted me during those first few months of learning about Joubert Syndrome and the road we would soon be traveling.
If you're looking to give financial support to any organization, I urge you to consider donating to the Joubert Syndrome and Related Disorders Foundation. Trust me, it's worth it!
