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Most of our kids can't walk or talk.
They have to deal with serious health issues like
and/or
We are a group of passionate parents from all over the world
coming together to fund life-changing research on CACNA1E.
We bring families, doctors and the world's
best scientists together in a collaborative effort.
There is already research underway in a renowned clinic in Germany,
aiming to develop a drug specialized in treating CACNA1E.
We support this research not only with financial resources,
but also with presence and public relations work.
Our kids need a targeted treatment and cure.
Be part of our mission, show solidarity, donate
and help us become better known worldwide!
PARTICIPATE IN THE NATURAL HISTORY STORY
TO HELP RESEARCH GAIN A BETTER UNDERSTANDING FOR DEE69
AND OPTIMIZE TARGETED TREATMENTS!
Our association aims to make a register of all current CACNA1E patients in the world.
So if you or your child have been diagnosed, we would be pleased if you contact us!
Have you been diagnosed with CACNA1E? We invite you to contact us at info@cacna1e.org
or send us
a Membership Application at membership@cacna1e.org!
There are various variants of CACNA1E, some more severe than others.
Read all about the symptoms that might occur with this genetic mutation.
Meet our brave warriors.
Life hit them so hard,
as well as their caring parents
who wrote down their stories.
Become a member of CACNA1E International!
Either as a Member of Honor, an Active Member or a Member of Solidarity!
Facebook Site:
"Cacna1E International"
Facebook Group:
"CACNA1E support group"
Instagram:
@cacna1einternational
LinkedIn:
CACNA1E International