Events

Jun
6
Sat
East Coast Rettsyndrome.org Ed Day – POSTPONED
Jun 6 @ 9:00 am

Postponed-East Coast Rettsyndrome.org Ed Day

Due to COVID-19, this event has been postpone.

Baltimore, MD (in partnership with Kennedy Krieger Institute )

Our Ed Days are for everyone wanting to connect with experts in the field of Rett syndrome especially families, caregivers, educators, clinicians, and therapists. Participants will enjoy a rich and informative day of topics and discussions covering research updates, medical and therapeutic intervention strategies, communication strategies, and more.

REGISTRATION & INFORMATION

Aug
11
Tue
RettEd: What Hurts? Understanding Pain and Rett Syndrome feat. Dr. Frank Symons
Aug 11 @ 1:00 pm

Please join us Tuesday, August 11, 2020 at 1:00 pm Eastern Time (New York) with Dr. Frank Symons, Associate Dean for Research and Policy, Department of Psychology, and the Center for Neurobehavioral Development at the University of Minnesota as we discuss issues of pain in Rett syndrome.

Rett syndrome is a complex disorder, and sharing of accurate information is more than empowering, it can be life-saving for our children with Rett syndrome. So join this webinar to learn the facts. Even though the topic is difficult to talk about, we know you think about it. In terms of pain, Dr. Symons’ areas of specific research include (a) the reliable and valid assessment of pain in children and adults with significant communicative and motor impairments; (b) the relation between behavioral and biological variables as markers for altered pain; (c) modifying/adapting sensory testing; and (d) the relation between pain and problem behavior, specifically self-injury.

With this in mind, what’s on your mind? Register now and submit your questions and thoughts. Those submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session.

Information & Registration

Oct
13
Tue
RettEd: Clinical Trial Update
Oct 13 @ 1:00 pm

Please join Rettsyndrome.org on Tuesday, October 13, 2020 at 1:00pm Eastern Time (New York) for status updates on clinical trial and research enrollment opportunities in the U.S.

Rett syndrome is a complex disorder, and sharing accurate information is more than empowering, it can be life-altering for everyone. Join this webinar to learn how we all have a role to play in research progress.

With this in mind, what’s on your mind? Register now and submit your questions and thoughts. Those submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session.

Information & Registration

Nov
15
Sun
Rett Education 2020, Online Conference
Nov 15 – Nov 21 all-day

Rett Education 2020

Communicate, Educate, Advocate
7-day online conference with international expert speakers

Date: November 15-21, 2020

Details: Unlike physical conferences where you can end up sitting through content you just don’t need, Rett Education 2020 – Communicate, Educate, Advocate is delivered entirely online. Dip in and watch the specific talks you want or catch them all. It’s up to you! All talks will be available to watch again or watch later, as long as you have registered.

REGISTRATION & INFORMATION

Dec
8
Tue
RettEd: What Do They See? Vision in Rett Syndrome
Dec 8 @ 1:00 pm

Join us Tuesday, December 8th, at 1:00 pm (EDT) to hear from Tristen Dinkel, RN about Cortical Visual Impairment (CVI) in Rett syndrome. Our loved ones with Rett syndrome often exhibit particular eye movements or gaze patterns. Is this a motor behavior or visual strategy? What do our children see? How do they process visual information?

Register now, and submit your questions. Pre-submitted relevant questions will be addressed, and there will be time for write-in questions during the session.

REGISTER

Our RettEd Webcasts are Free, but registration is required. RettEd Webcasts are recorded. When you register, you will receive a link to the recording within 1-2 days after the presentation.

Rettsyndrome.org is committed to standing with you today, to fighting to transform your tomorrow. Check out our other upcoming webcasts, as well as an incredible library of past webcasts on multiple Rett topics: www.rettsyndrome.org/education.