Need a new search?

If you didn't find what you were looking for, try a new search!

9 08, 2021

CDC Awards $4 Million Cooperative Agreement to Build on the Work of the FORWARD FXS Natural History Study!

By |2021-08-10T10:46:48-04:00Aug 9, 2021|Blog|Comments Off on CDC Awards $4 Million Cooperative Agreement to Build on the Work of the FORWARD FXS Natural History Study!

A $4 million cooperative agreement to “Characterize the Natural History of Fragile X Syndrome to Inform the Development of Intervention and Outcome Measures” was awarded to Dr. Elizabeth Berry-Kravis of Rush University Medical Center by the Centers for Disease Control and Prevention (CDC).

9 04, 2018

CDC Funding for Fragile X – Coalition Letter

By |2018-04-09T15:30:50-04:00Apr 9, 2018|Advocacy, Research|Comments Off on CDC Funding for Fragile X – Coalition Letter

There is strength in numbers, which is why we work with other patient advocacy groups on common goals, such as funding at the National Institutes of Health (NIH), the Centers for Disease Control and Prevention [...]

10 07, 2017

FY18 CDC Funding

By |2017-07-10T16:20:27-04:00Jul 10, 2017|Uncategorized|Comments Off on FY18 CDC Funding

The President's budget cuts CDC funding for Fragile X research and awareness. Rep. Tom Cole (R-OK-4) and Sen. Roy Blunt (MO) oversee this funding and are working on the bill now! Contact their offices to [...]

14 09, 2015

CDC Awards $1.75 Million Grant to Expand Nationwide Registry for Fragile X Syndrome

By |2015-09-14T13:37:20-04:00Sep 14, 2015|Advocacy Day, FXCRC and Clinics, In the News, Keeping You Informed|Comments Off on CDC Awards $1.75 Million Grant to Expand Nationwide Registry for Fragile X Syndrome

A $1.75 million grant to continue research on Fragile X syndrome was given to the Institute for Basic Research (IBR), Willowbrook, by the Centers for Disease Control. Fragile X syndrome is the most common known cause [...]

30 08, 2013

Sitio de CDC de Síndrome de X frágil ahora en español | CDC Fragile X Syndrome Site Now in Spanish

By |2013-08-30T13:20:29-04:00Aug 30, 2013|Keeping You Informed|Comments Off on Sitio de CDC de Síndrome de X frágil ahora en español | CDC Fragile X Syndrome Site Now in Spanish

http://www.cdc.gov/ncbddd/spanish/fxs/index.html Los Centros para el Control y la Prevención de Enfermedades (CDC, por sus siglas en inglés) ha traducido en español su página web sobre el Síndrome X Frágil.  El sitio es igual [...]

26 10, 2023

Fragile X Clinical & Research Consortium and Outcome Measures Meeting

By |2023-10-30T17:19:25-04:00Oct 26, 2023|Blog|Comments Off on Fragile X Clinical & Research Consortium and Outcome Measures Meeting

The FXCRC met in Denver, CO to discuss the status of treatment in Fragile X syndrome. A half-day outcome measure meeting was held with representatives from the FDA, industry, the FXCRC and families living with FXS.

3 10, 2023

FORWARD-MARCH 2023 — Webinar

By |2023-10-25T17:22:52-04:00Oct 3, 2023|Webinar|Comments Off on FORWARD-MARCH 2023 — Webinar

Drs. Elizabeth Berry-Kravis and Nicole Tartaglia presented updates about FORWARD-MARCH, followed by a Question and Answer session covering the specifics of the study.

27 08, 2023

Reproductive Health and Your Options

By |2023-11-07T12:25:15-05:00Aug 27, 2023|Comments Off on Reproductive Health and Your Options

Reproductive Health and Your Options There is no one way to grow a family. Whether you know you carry a gene that can be passed on to your future children and want to explore [...]

Load More Posts