Rare Disease Day
“Rare diseases may be individually rare, but they are collectively common. There are millions of people living with rare diseases. Today and every day, doctors like me care for rare, and it’s our privilege.” - Dr. Wendy Chung
Channeling Hope Foundation
A global community of families and researchers to collaborate to advance care and develop treatments for individuals affected by NALCN Channel-related disorders. (NALCN, UNC80, UNC79, FAM155)
Latest
Jul 12
Time 2 Celebrate!
We are celebrating 2 years as the Channeling Hope Foundation!
This milestone has us looking back at all we have
1 min read
Jun 26
Big News! Big Changes! Bigger Plans!
Early Bird Registration Extended to July 15 - We are thrilled to announce that registration for the 2nd International NALCN
5 min read
Apr 16
EXCITING NEWS: Registration Now Open for NALCN 2025!
We are thrilled to announce that registration for the 2nd International NALCN Channel & Related Diseases Conference is now open!
2 min read
Mar 01
Patient Families: Make your mark!
April 1, 2025 Update: We asked and 63 of you responded! Drumroll please...
Channeling Hope Foundation was 1 of 5
2 min read
Jan 27
From Milestones to Momentum: Reflecting on 2024, Building in 2025
Reflecting on 2024, the Channeling Hope Foundation (CHF) is proud to share the remarkable achievements and milestones that marked the
4 min read
Oct 28
Patient Data Collection through RareX is Live
Originally posted 10/28/2024. Updated 5/28/2024 to reflect ongoing data collection through RareX.
RareX is the host
3 min read
Oct 01
CHF Science Around the World
In our last newsletter, we shared highlights from our organization's first year in operation. In this issue, we
4 min read
Aug 05
It's our 1st Birthday!
In July, we celebrated the first anniversary of our founding, and August marks one year of having 501(c)(3)
2 min read
Jun 21
Skin to Stem: One family's odyssey to the space city to support CLIFAHDD research
Researchers on Channeling Hope's scientific advisory board need to collect a skin biopsy from a current patient to
2 min read
May 14
Project Wellcast: Clinical Trial
August 2025 Update: Enrollment has closed. We hope all the families that participated learned valuable play and/or coping skills.
2 min read
May 07
Phenotype Study Webinar
You can access the recording of this webinar on our Family Resource Page. Access is for members only (free option
2 min read
Mar 19
Scientific Update
Channeling Hope Foundation held a second "Friends and Family" webinar in February. The webinar was recorded for those
5 min read