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Kelly Barnes
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The IFCR is now a member of NORD12/19/2011 - The International Foundation for CDKL5 Research is very happy to announce that we are now a member of the National Organization for Rare Disorders (NORD). NORD is dedicated to helping the nearly 30 million Americans with rare diseases, and the organizations that serve them, through programs of
Read More... Pajama Day to Benefit the IFCR11/18/2011 - Each month, Central Elementary School in Grand Rapids, MI hosts a donation day with each grade (K-5)taking its turn in selecting the charity and the special day. For the month of November, Ms. Kristeen Hendsbee’s 4th grade class chose to donate to the IFCR to wear their
Read More... Concert at the Kate Benefit Concert6/11/2011 -
In conjunction with the town of Old Saybrook, Youth and Family services and Bills Seafood, a fabulous evening took place on June 11, 2011 at the Kate in order to support "Team Avery" in their efforts to raise both awareness and funding for CDKL5 research.
There was a benefit
Read More... Kiera's Chuck Wagon Supper Fundraiser4/9/2011 -
On April 9, 2011, Kiera's Chuck Wagon Supper Fundraiser for the International Foundation for CDKL5 Research was held at Eckerts Country Restaurant in Belleville, IL. Activities for the evening included silent auction, a raffle and 50/50 drawing. The host restaurant served a delicious meal and a
Read More... The IFCR takes part in Rare Disease Day2/28/2011 - February 28, 2011 is Rare Disease Day throughout the world. This year’s theme is “Rare but Equal” which will highlight rare diseases and health inequalities. On that day hundreds of patient organizations from more than 40 countries worldwide will be organizing awareness-raising
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Events
Rare Disease Day USA 02/29/12 | EverywhereThe International Foundation for CDKL5 Research will be participating in the 4th annual observance of Rare Disease Day USA on February 29, 2012. The day has been established as a grassroots advocacy day and everyone is encouraged to participate in some way. This year’s theme is solidarity ...more
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