Apr
12
Fri
Categories: Ed Day Education Slider
Apr
27
Sat
Hosted with Gillette Children’s Specialty Healthcare Rett Syndrome Services Clinic - St. Paul, MN (Regional Association Partner)
Categories: Ed Day Education Slider
May
11
Sat
Categories: Special Events - Meetings/Symposiums
May
18
Sat
Categories: Ed Day Education Slider
Jun
22
Sat
Rettsyndrome.org Ed Day hosted by TBD – Boston, MA
Jul
20
Sat
Hosted by UCSF Benioff Children’s Hospitals Katie’s Clinic for Rett and Related Disorders, a Rettsyndrome.org Clinical Research Center of Excellence
Intended for anyone wanting to connect on issues important to Rett syndrome families, especially clinical trial information and emphasis on the enriched environment. Attendees will enjoy a fun camp-style day of discussion and “living education” activities that will cover: research updates, medical and therapeutic interventions, and communication strategies.WHEN | Saturday, July 20, 2019
WHERE | Camp Arroyo, 5555 Arroyo Road, Livermore, CA 94550
TIME | 9:00a.m. - 4:00p.m. (please arrive at 8:30a.m.)
Fee: $10/per person. Diagnosed children are FREE.
Includes: Presentations, hands-on activities and demonstrations, interactive panel discussion, continental breakfast and lunch. We will have an onsite photographer for family portraits for RSO awareness and education materials. If you choose to participate, photos will be shared with you at no charge. REGISTER NOW!Aug
27
Tue
![](https://www.rettsyndrome.org/wp-content/uploads/Sarika-and-Marie.jpg)
Categories: Education Slider Webasts
Sep
27
Fri
![](https://www.rettsyndrome.org/wp-content/uploads/076c213b9108d8c3c48a6f876f8f0b64.png)
Categories: Special Events - Meetings/Symposiums
Sep
28
Sat
![](https://www.rettsyndrome.org/wp-content/uploads/076c213b9108d8c3c48a6f876f8f0b64.png)
Categories: Special Events - Meetings/Symposiums
Oct
24
Thu
Oct 24 @ 9:00 am
WHEN | Thursday, October 24th, 2019 TIME | 9:00am WHERE | Monmouth University: Directions | Website Registration Information
Nov
2
Sat
Nov 2 @ 8:00 am
![](https://www.rettsyndrome.org/wp-content/uploads/URMC-RS-Family-Ed-Day.png)
Categories: Ed Day Education Slider
Dec
10
Tue
![](https://www.rettsyndrome.org/wp-content/uploads/TimBenke-1.jpg)
Categories: Education Slider Webasts
Jan
7
Tue
![](https://www.rettsyndrome.org/wp-content/uploads/jan.png)
Categories: Ed Day Education Slider
Feb
11
Tue
![](https://www.rettsyndrome.org/wp-content/uploads/Fink-Headshot2-scaled.jpg)
Categories: Ed Day Education Slider
Mar
10
Tue
![](https://www.rettsyndrome.org/wp-content/uploads/Meir-Lotan.png)
Categories: Ed Day Education Slider
Apr
23
Thu
Apr 23 @ 1:00 pm
![](https://www.rettsyndrome.org/wp-content/uploads/april.png)
Categories: Ed Day Education Slider
Aug
11
Tue
Aug 11 @ 1:00 pm
![](https://www.rettsyndrome.org/wp-content/uploads/03ede092ac1b628d97e5e32798ef8417.jpg)
Categories: Education Slider Webasts Webinar
Oct
13
Tue
![](https://www.rettsyndrome.org/wp-content/uploads/Dominique-Pichard_crop-2.jpg)
Categories: Education Slider Webasts Webinar
Nov
15
Sun
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 Categories: Ed Day Education Slider
Dec
5
Sat
Vanderbilt Kennedy Center Rett Clinic Town Hall Meeting
Date: Sat, December 5, 2020 Time: 11:00 AM - 12:30 PM Are you wanting to understand the current state of clinical care recommendations and appointments? Maybe you’re wondering which clinical trials and future research look the most promising? And what about other local resources for your loved one and family? Perhaps you would like an opportunity to re-connect and re-center with your Rett community? We’ll be sharing insights on this, and much more during our upcoming Town Hall Meeting - live-streamed - on Saturday, December 5, 2020, at 11am -12:30pm (CT). Join us as Rettsyndrome.org, and the Rett Clinic team at Vanderbilt Kennedy Center discuss clinical care recommendations and appointments, clinical trials, the research process, and family empowerment opportunities. Information & Registration Categories: Special Events - Meetings/Symposiums
Dec
8
Tue
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.
![](https://www.rettsyndrome.org/wp-content/uploads/DinkelTristen-2015.jpg)
Categories: Education Slider Webasts Webinar
Feb
26
Fri
Are you wanting to better understand the current state of clinical care recommendations and appointments? Maybe you’re wondering which clinical trials and future research look the most promising? And what about other local resources for your loved one and family? Perhaps you would like to re-connect and re-center with your Rett syndrome community? We’ll be sharing insights on this, and much more during our upcoming Town Hall Meeting - live-streamed - on Friday, February 26, 2021, at 4pm -5:30pm Central time. Join us as Rettsyndrome.org, and the Rett Clinic team at UAB discuss clinical care recommendations and appointments, clinical trials, the research process, and family empowerment opportunities. Information & Registration
Categories: Special Events - Meetings/Symposiums
Jul
28
Wed
![](https://www.rettsyndrome.org/wp-content/uploads/35ea51cb1f3f8303b1b6b8df18262bbf.jpg)
Dec
8
Wed
Occupational Therapy Strategies: Maximizing Hand Function + Feeding
People with Rett often have difficulty controlling hand movements, which can lead to frustration in using communication devices and participating in adapted recreation and many daily activities. Feeding in Rett patients can also be challenging because of decreased motor skills when chewing and swallowing as well as communication issues in relaying what they want. If you're facing either of these issues, finding a trained therapist who understands Rett is key to creating reasonable goals, managing expectations, and perhaps recovering gains lost during a regressive phase of Rett. Todd Levy and Emily Scott from Children's Hospital of Philadelphia and IRSF Center of Excellence will discuss strategies they've seen work in Rett patients and outline the criteria to look for in finding an occupational therapist that will meet your loved one's needs. Information & RegistrationMar
11
Fri
Mar 11 @ 10:00 am – 3:00 pm
Rett Syndrome Externally-Led Patient Focused Drug Development Meeting Date: Friday, March 11th, 2022 Time: 10am-3pm EDT Location: Online via video conference (meeting registrants will receive an email with a link to the meeting)
The Rett Syndrome Externally-Led Patient Focused Drug Development (EL-PFDD) Meeting is our community’s one shot to provide the Food and Drug Administration (FDA) with insights to influence the development of new drugs to treat Rett. The International Rett Syndrome Foundation is co-hosting this event with the Rett Syndrome Research Trust. These organizations invite and encourage you to attend. Come and share about the impact of Rett syndrome on your family and how symptom improvements would affect you and your loved one’s quality of life. Together, we can make a difference for the future of Rett syndrome healthcare. Information & Registration
![](https://www.rettsyndrome.org/wp-content/uploads/EL-PFDD-Email.png)
Apr
26
Tue
Apr 26 – Apr 27 all-day
![](https://www.rettsyndrome.org/wp-content/uploads/22-Science-Meeting-Twitter-Post-760x425.png)
Apr
27
Wed
Apr 27 – Apr 30 all-day
![](https://www.rettsyndrome.org/wp-content/uploads/1894_IRSF_NtnlSummit_HmpgBNRRev_FLR-760x425.jpg)
Oct
21
Fri
Oct 21 @ 3:00 pm
![](https://www.rettsyndrome.org/wp-content/uploads/2022-Rett-Spectrum-Series-Banner.jpg)
Categories: Ed Day Education Slider
Oct
22
Sat
Oct 22 @ 8:00 am – 4:00 pm
![](https://www.rettsyndrome.org/wp-content/uploads/RettEd-Day_KKI_Website-1400x613-1.png)
Categories: Ed Day Education Slider
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