Events

Nov
18
Wed
Children’s Hospital of Philadelphia Rett Clinic Town Hall Meeting
Nov 18 @ 12:00 pm

Children’s Hospital of Philadelphia Rett Clinic Town Hall Meeting

Date: November 18
Time: 12:00pm

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 Wednesday, November 18, 2020, at 12pm -1:30pm (ET).

Join us as Rettsyndrome.org, and the Rett Clinic team at Children’s Hospital Philadelphia discuss clinical care recommendations and appointments, clinical trials, the research process, and family empowerment opportunities.

Then during the last half hour, we’ll be taking your pre-submitted questions*.

Guest Presenters:
Children’s Hospital of Philadelphia: Dr. Eric Marsh, medical director
Rettsyndrome.org State Representative
Rettsyndrome.org: Paige Nues, host

Information & Registration

Dec
5
Sat
Montefiore Rett Clinic Town Hall Meeting
Dec 5 @ 3:00 pm

Tri-State Rett Syndrome Center Children’s Hospital at Montefiore Town Hall, feat. Dr. Djukic & More

Date: Sat, Dec 5, 2020
Time: 3:00 PM – 4:30 PM

Are you having difficulty understanding 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?

We’ll be sharing insights on this, and much more during our upcoming Town Hall Meeting – live-streamed – on Saturday, December 5, 2020, at 3pm -4:30pm (ET).

Join us as Rettsyndrome.org, and the Rett Clinic team at Children’s Hospital at Montefiore discuss clinical care recommendations and appointments, clinical trials, the research process, and family empowerment opportunities.

Information & Registration

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.

 

Dec
12
Sat
UCSF Benioff Children’s Hospital Oakland Rett Clinic Town Hall Meeting
Dec 12 @ 2:00 pm

UCSF Benioff Children’s Hospital Oakland Rett Clinic Town Hall Meeting

Date: December 12
Time: 12pm

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 Saturday, December 12, 2020, at 11am -12:30pm (PT).

Join us as Rettsyndrome.org, and the Rett Clinic team at UCSF discuss clinical care recommendations and appointments, clinical trials, the research process, and family empowerment opportunities.

Then during the last half hour, we’ll be taking your pre-submitted questions*.

Guest Presenters:
UCSF Benioff Children’s Hospital Oakland: Dr. Mary Jones, medical director & Katie Hale
Rettsyndrome.org: Paige Nues, host

Information & Registration