On April 23rd in New York City RSRT presented an event entitled "Curing Rett Syndrome – How Do We Get There?" The event was videotaped and is now available on RSRT's
YouTube channel.
Rare disease has captured the interest of industry, and companies are looking to invest in orphan drug development. Monica joins leaders from big pharma, regulatory agencies, NIH, venture capitalists and academia to discuss key issues such as patient advocacy, pricing, and partnerships.
A poignant story of a father's journey as he comes to grip with his daughter's diagnosis of Rett Syndrome.
Download from Amazon and Barnes & Noble for only $1.99. Proceeds benefit RSRT's research program.
Rachael Bloom joins RSRT Board of Trustees
The Rett Syndrome Research Trust (RSRT) has appointed Rachael Bloom to its Board of Trustees. She is a founder and the Executive Director of its United Kingdom-based partner organization, Rett Syndrome Research Trust UK. Her appointment further solidifies the global reach of RSRT’s mission to initiate and fund the most advanced Rett research worldwide.
RSRT awards record $4.2 million to research projects
In 2012 RSRT made, for the second year in a row, the largest annual research commitment of any Rett non-profit worldwide: $4.2MM. If you've donated to RSRT, this is YOUR money at work.
This past November in a peaceful New York City suburb, twenty-eight scientists gathered for a three-day meeting organized and sponsored by RSRT. In the age of email and Skype and webinars and GoToMeeting and a plethora of ways to connect people from across the world with a click of a mouse why does RSRT spend hard-earned money to bring scientists together for face-to-face meetings? Find out ...
RSRT joins Cystic Fibrosis Foundation, JDRF, Michael J. Fox Foundation, Leukemia & Lymphoma Society and others in a report that highlights insights and perspectives from leaders of 20 venture philanthropy groups that are transforming the cure enterprise.
"It is more difficult to give money away intelligently than it is to earn it in the first place." -Andrew Carnegie
Watch a short video clip from Prof. Adrian Bird discussing the challenges that charities face when allocating funds and why, in his opinion, RSRT is doing "it" the right way.
A poignant video describing how having a daughter, sister, cousin, grandchild, niece, friend with Rett Syndrome affects a family. The video was created pro bono by Jason Rem Entertainment.
Imagine the symptoms of autism, cerebral palsy, Parkinson’s, epilepsy, and anxiety…all in one little girl. This is Rett Syndrome. RSRT exists for one reason – to make these symptoms disappear. We are focused, impatient, rigorous and optimistic. Whether you are a parent, relative or friend of an afflicted child or adult, we welcome you to our site and invite your participation in our fight to conquer Rett.
