The Children's Rare Disorders Fund

05/12/2024

Epilepsy affects up to 470,000 American children and about 11 million children ages 15 and under worldwide. The condition causes regular seizures that can be difficult to control, and are—in some…

02/24/2024

Check out these ways to get involved on Rare Disease Day, February 29! Join us to show your support! ❤️ 🙌

11/28/2023

Holiday giving kicks off with !

💰 100% of donations to The Children’s Rare Disorders Fund are directed to research to cure , and nothing else.

🧒🏻 30% of kids with FOXG1 do not live to age 5. Most don’t make it to age 30.

🧬 Restoring function of the FOXG1 gene means that kids who previously could not walk, talk, sit up or feed themselves may be able to.

❤️ Give to The CRD Fund this holiday. Help us change, and save, lives. Link in bio.

11/25/2023

11/10/2023

November is Awareness Month! Check out our video featuring FOXG1 kiddos to learn more about !

09/30/2023

Very exciting news in the world of gene therapy! This makes us very hopeful as gene therapies are actively underway for FOXG1 Syndrome.

Earlier this year, it became the first approved treatment for the condition and the first marketed gene therapy directly infused into the brain.

07/26/2023

What does inclusion mean to you?? We’d love to hear from more families!

06/18/2023

Our Amazon list is here! www.amazon.com/shop/thecrdfund. We’ve complied some of our favorite things to make your life easier, we hope! Amazon directs a small percentage of any sale back to us. We direct 100% to research, and nothing else. 😃

06/14/2023

Gene mutations sound more complicated than they are! Learn more at thecrdfund.org 📚

05/04/2023

Meet Denise! Denise is a founding Board Member on our Executive Management Team. 😊

05/01/2023

The Cambridge Rare Disease Network is piloting a rare patient passport! This will be a private online portal where you can store all of your child’s info and history, so that when you need it, you can simply print it or email it to your doctor or caregiver! No more endless conversations repeating the same info over and over! 😊 Congrats to Cam Rare Disease for taking on this initiative! 👏🏼 Sign up here: bit.ly/Rare-passport