STXBP1 News

STXBP1 News

“STXBP1 Foundation Opens Registration for Family Conference”
Registration is now open for families attending the STXBP1 Investigator & Family Meeting (SIFM) conference in Philadelphia on Saturday, June 22. Please click on here to register all family members who are planning to attend. Registration will be open through April 15.

“STXBP1 Foundation Receives CURE Grant”
The STXBP1 Foundation has received a Conference Support grant from CURE for our inaugural STXBP1 Investigator and Family Meeting, being held on 21-22 June in Philadelphia. CURE is Citizens United for Research in Epilepsy. Since its inception in 1998, CURE has raised more than $60 million to fund epilepsy research and other initiatives that will lead the way to cures for the epilepsies. The STXBP1 Foundation is honored to receive this conference support to further STXBP1 research, helping us on our mission to accelerate identification of improved therapies and to ultimately, end STXBP1 encephalopathy. 


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About CURE

News Archives

“A Battle Plan for a War on Rare Diseases”
Dr. Matthew Might is developing a strategy for people seeking treatments for little-known ailments.
View A Battle Plan for a War on Rare Diseases – The New York Times 09102018 here.
New York Times, September 10, 2018

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Emma Rose Make-A-Wish Trip (February, 2017)

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Parents Come Together for Parents Luncheon in Philadelphia (March 2016)

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CHoP Receives Corporate Donations from CSL Behring (June 6, 2016)

 

 

 

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Parents Hold First STXBP1 Charity Ball (February 20, 2016)