The NORD Breakthrough Summit took place in Washington D.C. earlier this week, and as always, it was informative and inspiring! The International Foundation for CDKL5 Research has been part of the National Organization for Rare Disease (NORD) for many years. This meeting is always a wonderful opportunity to network and meet with rare disease patients, non-profit leaders, and industry representatives to learn and find ways to work together to help support and make advancements in the rare disease community.
As a collaborative partner, CVI Now is joining the IFCR for an informative zoom meeting to review their resources with our community and empower families in the process! We hope you will join us November 13th at 11am ET! Please come ready to engage, ask questions, and learn! The session will be recorded, but we hope you will join us live!
CVI Now is non-profit created by Perkins School for the Blind to help serve those affected by CVI and their families and caregivers. Their websiteserves as a resource hub for people living with CVI and their caregivers.
The UCB GEMZ Study has lowered the enrollment age to include patients from 1 to 35 years old. If you are interested and would like to learn more, please click the link below to visit our page on research and clinical trials!
Also, we shared a survey in the spring, and if you did this, we thank you! If you did not, please consider participating. It will take approximately 10-15 minutes to complete. You can use this link or the QR code below.
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.
