Neuren receives Orphan Drug designation from FDA for Trofinetide in Rett syndrome

Today’s news of the first drug approved by the FDA to treat the symptoms of Rett syndrome is indeed cause for great elation in the Rett syndrome community!

Here is a link to the official announcement of this great news.

more insight into this medication and a first-hand perspective from a parent of a girl with Rett syndrome, click on this link.

UMass Medical School scientist working to reverse Rett syndrome

Video captures the personality and character of those with Rett syndrome

If you look at the face and peer into the eyes of a person with Rett syndrome you can get a great sense for their character and personality. Conversely, it’s been said that a person with Rett syndrome can “see into your soul”. That is what makes this inspiring video so special.

The video was a gift for clinicians and researchers from those who took part in the IRSF Natural History Study in Chicago since 2006. The purpose of this study is to establish a phenotype-genotype correlation over a broad spectrum of Rett syndrome phenotypes including the longitudinal pattern of progression of clinical features, quality of life, and longevity across this cohort. For more information about this study click here.

The video is so good we had to share it with a broader audience. The views that photographers enjoyed during precious moments in time are truly spectacular! Kudos and thanks to those responsible for the photos and video.

Message of hope and strength from IRSF and CureRett

The simple power of being connected is what makes the Rett syndrome community so special. In this new video, IRSF and Cure Rett capture the spirit of hope and mutual understanding that connects us all.

Tags: , ,

Photos of Pope Francis Meeting with Members of the Rett Syndrome Community

Click on the link below to see photos from Pope Francis’ meeting with members of the Rett syndrome community at the Vatican on November 27, 2013. The photographer captured very touching moments that will forever be a cherished part of Rett syndrome history!

Fotografia Felici – Foto del Papa e delle udienze papali – Pictures of the Pope and from the papal audiences.

Tags:

Pope Meets With Children Who Are Living With Rett Syndrome

This headline caught our eye today, particularly the part about the meeting being “truly emotional”. We would love to see photos or videos of this event! If you were involved with this meeting, please get in touch with us. We hope the news of this meeting further raises awareness of Rett syndrome among and even wider audience.

 

Link to story: Pope Meets With Children Suffering From Rett Syndrome | ZENIT – The World Seen From Rome.