Newly added to the NIH National Library of Medicine, National Center for Biotechnology Information, GeneReviews - CDKL5 Deficiency Disorder!
You will recognize the authors as members of our International CDKL5 Clinical Research Network (ICCRN) team!
Family participation in the International CDKL5 Disorder Database and visits to the CDKL5 Centers of Excellence in the US continue to inform knowledge of this rare disease that can be utilized by doctors around the world!
Your donation dollars at work!
GeneReviews is an international point-of-care resource for busy clinicians and provides clinically relevant and medically actionable information for inherited conditions in a standardized journal-style format, covering diagnosis, management, and genetic counseling for patients and their families. Each chapter in GeneReviews is written by one or more experts on the specific condition or disease and goes through a rigorous editing and peer review process before being published online.
New on the Blog: A CDKL5 Family's Experience with Home Care
Bennett, who lives with CDKL5 Deficiency Disorder, was recently featured in Costal Kids Home Care's "We Care for Rare" campaign. We asked his mom, Kara, to share with us about home care support and what it means for her family. Check it out!
This event brings together our CDKL5 community of families, researchers, and providers from around the globe. Participants gather together under one roof to learn the most current information about recommended clinical care and therapeutic interventions, as well as the latest on the CDKL5 research landscape.
This in-person event is treasured by our community. There is nothing that can replace meeting face-to-face with CDKL5 experts, learning during the workshops, and spending time developing lasting relationships with other parents, attendees, and all of us at the IFCR.
We look forward to seeing you!
An Update from Ultragenyx
"Connect CDKL5" families received this update in April regarding the UX055 investigational gene therapy program with Ultragenyx.
"We remain actively engaged in the program as our team seeks to optimize the dosing strategy and design
of a potential first-in-human study."
We appreciate this update and look forward to sharing more information as it becomes available.
Get Ready to Move CDKL5 Forward!
Our 4th annual Move CDKL5 Forward event is coming up fast and we are so excited to MOVE and RAISE AWARENESS and FUNDS throughout June CDKL5 Awareness Month! We hope you'll join in!
Create your page by May 25th for an early-bird gift!*
We have a $22,000 mile match sponsor!! Help us MOVE 22,000 miles and raise $100,000 throughout June - we can do it, but we need your help to get there!!
Join us on Friday, May 17 for a "CDKL5 Chat" hosted by someone from our Family Support Rep program. This is an informal, virtual gathering. Pop in and out as needed! We know how unexpected this life can be. We would love to see you!
We know how hard life with CDKL5 can be and we are here for you whenever you need us.
Would you like to speak with a fellow CDKL5 parent who knows what you're facing? We have peer caregiver support volunteers who are available to offer a listening ear or resources that can help.
Does your loved one with CDKL5 have a sibling? Request a "VIP Sibling" kit for them! This program helps celebrate rare epilepsy siblings for the unique experience they have.
Did you know? Our website is a great place to learn what clinical trials are enrolling for CDKL5!
There are opportunities for interventional trials as well as clinical research, including ways to participate in CDKL5 research from your home, anywhere in the world!
This information and even more can be found on our website. Check back frequently for updates as new opportunities emerge!
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Have you joined Connect CDKL5?
Connect CDKL5 families receive direct communication about clinical trial opportunities for CDKL5 and other information important for families.
