The goal of the XLID98 Foundation is to support families of individuals affected by XLID98 (also known as KIAA2022/NEXMIF/MRX98) worldwide.
Our hope is to establish a supportive community, educate families, foster collaborations with physicians, scientists and other patient advocacy organizations. We will also be raising awareness and supporting medical research, helping children diagnosed with this rare condition get the treatment they need to improve their quality of life.
The XLID98 Foundation is an internationally focused charity working to improve the lives of families affected by XLID98 world wide. We received status as a registered charity in Canada in October 2023. We can accept international donations, but can only provide tax receipts to Canadian Citizens at this time.”
Financial Transparency Statement
Building a community of families and professionals around the world to promote awareness, understanding, support, and treatment of people affected by XLID98.