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CDKL5 in Color

@cdkl5incolor.bsky.social

On the CDKL5 in Color podcast you'll hear lessons learned direct from parent caregivers of children living with #CDKL5 Deficiency Disorder, a rare developmental and epileptic encephalopathy. www.CDKL5inColor.com

58 Posts150 Follower350 Folgt
CDKL5 in Color@cdkl5incolor.bsky.social · 3mo ago

It's June and for #CDKL5 families around the world that means it's awareness month! We like to do something special on the podcast for June. This year, we are tackling a sensitive, but important topic - caregiver guilt. Listen for free on Spotify, Apple Podcasts, & YouTube!

CDKL5 in Color@cdkl5incolor.bsky.social · 11mo ago

✨ We are collaborating on a project with ASGCT - American Society of Gene & Cell Therapy. Help by sharing your understanding of gene therapy and drug development in this short quiz. Do it by Sept 30 and be eligible to win a $25 Amazon gift certificate! ➡ Link: forms.gle/LBPKfyHexrDw...

CDKL5 Knowledge Assessment

We are partnering with the American Society of Gene & Cell Therapy (ASGCT) on educational content for our CDKL5 community. You can help us prepare by taking this short quiz. Don't worry, your score do...

forms.gle

CDKL5 in Color@cdkl5incolor.bsky.social · last yr.

🙌 Our co-host, Marissa, had an article published with RARE Revolution Magazine entitled "From isolation to connection: One rare caregiver's passion to build community." ➡ Check it out here: rarerevolutionmagazine.com/from-isolati...

From isolation to connection: One rare caregiver's passion to build community

When Marissa Bishop’s vision of the future changed with her son’s rare disease diagnosis, she discovered very quickly the importance of community and finding ‘your people’. She discusses the support s...

rarerevolutionmagazine.com