I’m the mom of three kids and my middle son, Philip, is undiagnosed with a rare condition. I’ve become more involved in advocacy as it relates to access to diagnosis for individuals with rare disease, particularly ultra rare.

Philip had several complex medical issues which didn’t fit together and we were introduced to the Undiagnosed Diseases Network (UDN). Because Philip is a patient in the UDN, I became involved in advocating for the UDN as a resource for the rare disease community as well as helping found the Undiagnosed Diseases Network Foundation (UDNF). 

Please consider making a donation to support the mission of the Undiagnosed Diseases Network Foundation to improve access to diagnosis, research and care for all with undiagnosed and ultra-rare diseases.