Raising awareness and educating others about CDKL5 Deficiency Disorder is one of the most important things you can do! Any time is a good time to spread #CDKL5Awareness, but there are some dates where sharing about our rare disease is particularly powerful: Rare Disease Day (Feb 28 or 29), Purple Day for Epilepsy (Mar 26), CDKL5 Awareness Month (June), World CDKL5 Day (June 17), Epilepsy Awareness Month (November).
- Check out our CDKL5 Awareness Packet for helpful tips!
- Get info on how to share about the IFCR in our Talking Points Packet.
- Learn how to increase exposure for CDKL5 with our Media Toolkit and Proclamation guide.
- See what you can do during CDKL5 Awareness Month.
- We are also always looking for photos of CDKL5 families and events.
The IFCR is always looking for volunteers to serve on our committees, work as Family Support Representatives, and help with a variety of initiatives, including our biennial CDKL5 Family Education & Awareness Conference. Learn more about volunteer opportunities with our organization, or please contact us.
Help Our Researchers
The IFCR sponsors a wide range of research to help find treatments and a cure for CDKL5 Deficiency Disorder. Even simple data about your affected loved one’s symptoms can make a big difference to our understanding of CDD. Find out all the ways you can help be part of finding a cure.
Host a Fundraiser
There are infinite ways to host a fundraiser – from partnering with local businesses to creating your own personal fundraising page. Get fundraising ideas here!
No gift is too small. Every donation matters. Donate here.