Welcome to our Ring14 Family.
You are not alone! We are present on 5 continents, in 23 countries and we communicate in 5 languages. Our main goal is to help families overcome their isolation, encourage them in times of fear, give them useful medical information concerning the healthcare of their child and to try to give them hope, without creating false expectations. These syndromes are very serious and life-threatening: the more families are informed and aware, the more they can help their child. We are here for you. And we hope to meet you someday in person at a family conference or virtually on our Facebook closed group: https://www.facebook.com/groups/1018090014895195/
Helpful Information:
In 2017, our scientific community was able to publish its first guidelines for care paper for patients with Ring14 Syndrome to be used by physicians and caretakers. This was a major achievement that was funded by Ring14 International through donations by our national organization, like Ring14 USA. We hope you find the information helpful: “Guideline recommendations for diagnosis and clinical management of Ring14 syndrome—first report of an ad hoc task force.“
Debbie Gregoire, a former board member and mother, wrote A Mother’s Guide to Good Health & Seizure Control with the desire to help new families learn from her experience and the combined experiences of some more veteran parents. Although this is not written by a doctor nor a nurse, it does provided some great information from a very informed mother but should not be considered medical advice.