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The CURE brings together a community of extraordinary parents of children with undiagnosed, rare and complex medical conditions, to learn, share and support each other amidst their long journey.
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The fact is...It is difficult for any parent to watch their child suffer. For parents of a child suffering from a condition that lacks diagnosis adds to the anguish. Without a diagnosis, their child is subjected to an ongoing multitude of medical testing, sometimes receives inappropriate and ineffective treatments at great emotional, physical and financial cost.
The journey to diagnosis is long and medically complicated. While a child remains undiagnosed, they and their families face uncertainly, isolation as well as struggle to access health, educational, social services, funding and benefits. |
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What our families say...
“In many ways we are isolated in our daughter’s condition within the confines of her nurses, doctors and medical personnel. This group provides an outlet of support between the parents of real patients who are fighting similar battles. Like one knife sharpens the other, we are all proactive members in advocating for the wellness and recovery of our children. While medicine and technology are constantly changing our hope stays the same. Our high morale keeps the information flowing and each of the group members educated or at least aware of prospective upcoming advancement of medical resources.”
- Veronica & Chris
- Veronica & Chris
“Our family has been attending the Undiagnosed Support Group meetings since 2015. My search for a diagnosis for my 20 year old daughter and 15 year old son is a long and lonely journey. No one understands the emotional roller coaster I experience in the process like the parents in our group. Besides the guidance and the emotional support we receive, I also appreciate the guest speakers who share their knowledge and resources to help this community. In fact, I was connected with the speakers from The Mitchell Thorpe Foundation and they are assisting my family to fund raise for a wheelchair accessible van to transport two wheelchairs.”
- Cathay
- Cathay
“Our family has been fortunate enough to participate in the San Diego Undiagnosed Family Support Group since 2014 and we have benefited from the wealth of information shared by the speakers and other parents. We have learned about the latest genetic tests, medical conferences, top medical specialists, community support resources, and heard the inspiring journeys of other parents with undiagnosed children.
It’s been remarkable to see the group evolve from a few families meeting under the blue skies at Walnut Grove Park to a packed conference room at its new home at San Diego Ronald McDonald House. I would highly encourage any families facing the stress of not having a diagnosis to attend a meeting. You don’t have to go it alone and will be empowered by the information and advice provided!”
- David & Miyoko
It’s been remarkable to see the group evolve from a few families meeting under the blue skies at Walnut Grove Park to a packed conference room at its new home at San Diego Ronald McDonald House. I would highly encourage any families facing the stress of not having a diagnosis to attend a meeting. You don’t have to go it alone and will be empowered by the information and advice provided!”
- David & Miyoko
Our team
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Caroline Cheung-Yiu is the mother of a boy diagnosed in 2018 with a previously undiagnosed neurological rare disease known as NEDMSS/IRF2BPL disorder. It was a diagnosis that ended a long 12 year diagnostic journey. While seeking answers for her son’s constantly shifting illness, she created the San Diego Undiagnosed Family Support Group to connect families lacking a diagnosis for their child and empowering them with resources to forge ahead in their diagnostic odyssey.
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