Cure KCNH1 Foundation
Home | Cure KCNH1
872041980
Encinitas, CA 92024 USA
curekcnh1.org
curekcnh1
treatments4tristan
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News
Proud to share some of the highlights of our foundation’s work over the course of our first two years! https://t.co/8cdLnyvQf6 (tw)
Excited to be featured in the spring edition of UC San Diego Magazine, following the feature article on rare-disease research being conducted at UCSD: https://t.co/1qoqc2KohY https://t.co/XmKzi9mUGI #ucsd #ucsdalumni #ucsdbiology #organoids #raredisease #curekcnh1 https://t.co/OG5px5Ejpp (tw)
Poslední diskuze
Nearby
4.5
Encinitas
About the organization
- 619, H01 -
About Us What is KCNH1 What Wex27re Doing Donate Advancing research to develop treatments for KCNH1related disorders KCNH1 genetic disorders are rare neurological conditions that cause seizures profound intellectual disability severe movement and speech disorders and various medical complications. Cure KCNH1 Foundation is a patient advocacy organization dedicated to raising awareness about KCNH1 genetic disorders and improving the lives of children and families by advancing research in the search for better treatment options and a cure. Our Story My husband and I were thrilled to welcome our fourth and final boy to the world on November 26th 2019. After a scary delivery everything seemed to be stable but once all the doctors and nurses had left the room I asked my husband if he thought Tristan was okay because something about his eyes didn39t look quite right my husband agreed but nobody at the hospital mentioned anything so we didn39t think too much more of it.
Alliance/Advocacy Organizations
