Remembering Hayden
Grief caused by the loss of a child is always just under the surface of all our other emotions – even happiness.
Grief caused by the loss of a child is always just under the surface of all our other emotions – even happiness.
We are beyond thrilled to announce that Stories of GRI e-book and paperback are now available!
One of the mysteries about GRI disorders is why some patients are far more affected than others. It was interesting to find out that even among 8 patients with the same exact variant, there was a wide difference in abilities.
The potential treatment also led to clinical improvements in other symptoms, and was well tolerated from a safety perspective.
My name is Kat Reiher, I am the lead Ambassador for CureGRIN, and I wanted to write about Rare Across America!
In just one week, nearly 150 families representing 10 genes and 16 countries have completed and submitted the GRI Census.
Since our founding in 2019, CureGRIN has been working tirelessly alongside researchers, clinicians and industry to accelerate the path to treatments and cures. There are many promising compounds and genetic treatments, but there are barriers in getting those to clinical trial. Adding ICD-10 codes for these nine genes would remove a significant barrier to clinical trials, by helping us to better understand where our patients are located.
A recently published clinical trial found that a new treatment, L-serine, appeared to have some positive effects in a small group of children with GRIN Disorder.
Since our founding in 2019, CureGRIN has been working tirelessly alongside researchers, clinicians and industry to accelerate the path to treatments and cures. There are many promising compounds and genetic treatments, but there are barriers in getting those to clinical trial. Adding ICD-10 codes for these nine genes would remove a significant barrier to clinical trials, by helping us to better understand where our patients are located.