By Hilary Rosselot|2023-12-12T21:37:59-05:00Nov 12, 2020|
Bringing Your STX209 Data Home The National Fragile X Foundation, with the help of several professionals, has secured an agreement to obtain STX209 trial participant data through a reconsent process. We need a total [...]
By NFXF|2024-02-28T14:45:23-05:00Jul 16, 2013|2013, Advocacy, Advocacy Day, Seaside STX209|
(c) Photo: Laura Gilmore For more than 10 years the NFXF has been participating in the life-sized chess game that is the federal budget. Even before the decision was made to bring [...]
By NFXF|2013-05-18T09:01:37-04:00May 18, 2013|News Reports and Commentaries, Seaside STX209|
To our Fragile X family: Many of you by now have heard the news that Seaside Therapeutics has decided to end their extension of the trial medication known as Arbaclofen (STX209). The NFXF Board of [...]
By NFXF|2013-05-16T11:03:00-04:00May 16, 2013|Keeping You Informed, News Reports and Commentaries, Seaside STX209|
Late yesterday afternoon the NFXF, along with all of the study locations, was contacted by Seaside Therapeutics and informed that the “Study 209FX303 [An Open-Label Extension Study to Evaluate the Safety, Tolerability, and Pharmacokinetics of [...]
By NFXF|2012-03-27T13:52:35-04:00Mar 27, 2012|News Reports and Commentaries|
New Patent Complements STX209 Orphan Drug Designation for Fragile X Syndrome CAMBRIDGE, Mass., Mar 27, 2012 (BUSINESS WIRE) -- Seaside Therapeutics, Inc. announced today that the United States Patent and Trademark Office (USPTO) has [...]
By Kristin Bogart|2023-12-14T11:17:44-05:00Sep 27, 2023|Research, Webinar|
The NFXF hosted a Fragile X research updates webinar with three of our industry partners working on treatments for Fragile X syndrome. Each shared the most up-to-date information on their research project(s) in a way that is understood by those who aren’t steeped in drug research day in and day out. A short Q&A followed each presentation.
By Hilary Rosselot|2021-10-07T14:11:53-04:00Sep 20, 2021|Research|
We held an NFXF Webinar with three of our industry partners working on treatments for Fragile X syndrome. Each shared the most up-to-date information on their research project(s) in a way that is understood by those who aren’t steeped in drug research day in and day out. A short Q&A followed each presentation.
By Dany Petraska|2023-08-29T13:54:31-04:00Nov 12, 2020|
NFXF Research Readiness Program Our mission has always been and continues to be providing unwavering support for every family affected by Fragile X, while relentlessly pursuing a cure. As a patient advocacy organization [...]
By Amie Milunovich|2023-11-03T12:54:12-04:00Nov 12, 2020|
NFXF Data Repository Qualitative Survey Data Now Available! The NFXF Data Repository was created to help advance Fragile X research by making previously inaccessible, collected data available to researchers and investigators. By centralizing data [...]
By Dan Whiting|2023-12-21T00:36:20-05:00Jun 13, 2018|Webinar, Webinar Conference|
A discussion of the upcoming conference including how to get the most out of your time, what to look for, and how to have a great time and connect with the community.