General Assembly2021
Activity Report
Contents
Family Focus
Financial Report
Executive Board
Reaching out to our membership
Future plans
Resources
Refreshing the website
Networking
Improving communication
Scientific Advisory Board
Executive Board
Elected during GA 2020 for a 3 year term
Sandrine Eifermann Soutarson
Becky Jenner
Stella Peckary
Laura Kanapieniene
Bojana Milanov
PresidentUK
TreasurerAustria
SecretaryLithuania
MemberSerbia
MemberFrance
Reaching out to our membership
June 2021 Survey, 23 countries. Headline results:
Communication preferences
Membership fee structure is OK
RSE aims remain relevant
Reaching out to our membership
Improvement areas
Communication
Research
Website
More frequent communication with variety of content, as well as higher involvement on social media
Needs updating various parts of the content, especially with most recent research news
More support for collaborative research across Europe
Refreshing the website
Reviewed content and presentation
New features:
Family Focus
Scientific Advisory Board
Frequently Asked Questions
Up to date News from Europe and the rest of the world
Key Resources – Recommended books and publications
Improving communication
Implemented changes
2 editions in 2021: June and October.91 subscribers
Quarterly E-newsletter
Six monthly meetings
The date for the first meeting should be decided in this General Assembly
SUBSCRIBE
More frequent and varied posts on FacebookNew YouTube channel
Activity on social networks
#LifeWorthLiving #LovingLife #LookAtMe
October awareness campaign
VIDEO
FACEBOOK
Improving communication
Some statistics
#LifeWorthLiving
4408
Facebook Likes
October campaign
Post Reach
First RSE awareness campaign with very active participation from families and good social media engagement
In the year Nov 20 to Nov 21 the total page likes has increased 24% most of which was in October
Facebook post reach in the last 28 days was over 4000 (post engagements 1.613) and above 7000 in October.
Family Focus
Hello Camille from Belgium !
In October, her family shares their story about the impact of diagnosis. We would like to give the stories a focus each month.
We want to pay tribute to all the Rett families who fight Rett challenges every day. Thus, we will be sharing stories from families across Europe about their experiences of life with Rett syndrome. We hope you will find them inspiring, heart warming and moving. We also hope you will feel you are not alone in dealing with the challenges that this devastating disorder presents everyday. Together we are stronger.
INFO
Resources
Some Useful Resources for Families
Rett UK Family RoadshowWeek long event, key international speakers
Rettsyndrome.org Fantastic series of webinars for therapy and research interests
Series of Rett Education Discussion Group (a live, interactive session) reflections on Rett Education 2020 – Communicate, Educate, Advocate
Rett Resource Translated into: Croatian, Dutch, French, German, Lithuanian, Macedonian, Russian, Serbian, Swedish and Turkish
Rett Syndrome Russia A series of four new films starting with rehabilitation (dubbed in English)
Is your language missing? Feel free to contact us and discuss the details of translation
Networking
Global Rett Leaders Forum
New initiative from rettsyndrome.org – quarterly meetings of representatives from Rett associations across the globe. Three meetings so far – sharing information and updates via Hive Networked group
Presentations from Russia with their rehabilitation project, Italy with the AirRett Centre in Verona and Spain with communication support and training.
Request for funding support for RettBase – collaborative funding is sought to update this resource and transfer to Clinvar
Next Meeting in February is focused on transition from children to adult services
Networking
Other events
Rett UK Family Roadshow Mar 21 – President Becky Jenner presented about RSE work
New Initiative In Switzerland Nov 21 – Rett Mum wants to start a research centre and clinic there. Becky Jenner and Gill Townend presented at the launch event Cure Rett Research Centre, Zurich
EURORDISMembership meeting May 21, 2021
The conference was organized through 4 workshops. RSE was represented by Becky Jenner and Laura Kanapieniene
EURORDIS
Online Digital School Webinar May 25, 2021
COMMUNITY ENGAGEMENT SKILLS Participated by Stella Peckary and Laura Kanapieniene
Scientific Advisory Board
Aims
To promote and support research (basic and applied) to improve the quality of life of people of all ages affected by Rett syndrome and their families.
To gather and disseminate up-to-date research information.
To promote multidisciplinary collaboration between countries within Europe and with other countries across the globe.
To share and promote best practice according to current available evidence.
More
Gillian Townend MRCSLT, PhD Chair Netherlands
Scientific Advisory Board
Members
Anne-Marie Bisgaard, MD, PhDDenmark
Bernd Wilken, MDGermany
Aglaia Vignoli, MD Italy
Ana Abdala, PhDEngland
Bojana Milanov, MDRSE Board Member Serbia
Danijela Szili, PhDHungary
Meir Lotan, MScPT, PhDIsrael
Michelle Stahlhut, PT, PhDDenmark
Peter Marschik, DPhil, PhDGermany
Sonia Guil, PhDSpain
Helena Wandin, SLT, PhDSweden
Jean-Christophe Roux, PhDFrance
Financial Report
2020
Financial Report
2020
Neusiedl am See (Austria), 09.10.2021
Stella Peckary, Treasurer RSE
Approved for the discharge of the Treasurer and the Executive Board of RSE by Elisabeth Nimmerrichter (ÖRSG)
10
Future plans
As discussed in GA
- Possibility for SAB to provide advice for member associations (instead of having their own separate SABs)
- Applying for 30.000 euros grant for research event in late 2022
- Involvement in European Reference Networks
- Continue good work and increase even more sharing of information between countries
- Option for professionals (doctors etc.) to consult with SAB if no local expertise exists
- Sharing and training on IT and admin knowledge
- February 15, 2022 - first 6 monthly online meeting for the members
Thank you for your attention and support
over the past few years
RSE General Assembly 2021 - Activity Report
Laura Kanapienienė
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Transcript
General Assembly2021
Activity Report
Contents
Family Focus
Financial Report
Executive Board
Reaching out to our membership
Future plans
Resources
Refreshing the website
Networking
Improving communication
Scientific Advisory Board
Executive Board
Elected during GA 2020 for a 3 year term
Sandrine Eifermann Soutarson
Becky Jenner
Stella Peckary
Laura Kanapieniene
Bojana Milanov
PresidentUK
TreasurerAustria
SecretaryLithuania
MemberSerbia
MemberFrance
Reaching out to our membership
June 2021 Survey, 23 countries. Headline results:
Communication preferences
Membership fee structure is OK
RSE aims remain relevant
Reaching out to our membership
Improvement areas
Communication
Research
Website
More frequent communication with variety of content, as well as higher involvement on social media
Needs updating various parts of the content, especially with most recent research news
More support for collaborative research across Europe
Refreshing the website
Reviewed content and presentation
New features:
Family Focus
Scientific Advisory Board
Frequently Asked Questions
Up to date News from Europe and the rest of the world
Key Resources – Recommended books and publications
Improving communication
Implemented changes
2 editions in 2021: June and October.91 subscribers
Quarterly E-newsletter
Six monthly meetings
The date for the first meeting should be decided in this General Assembly
SUBSCRIBE
More frequent and varied posts on FacebookNew YouTube channel
Activity on social networks
#LifeWorthLiving #LovingLife #LookAtMe
October awareness campaign
VIDEO
FACEBOOK
Improving communication
Some statistics
#LifeWorthLiving
4408
Facebook Likes
October campaign
Post Reach
First RSE awareness campaign with very active participation from families and good social media engagement
In the year Nov 20 to Nov 21 the total page likes has increased 24% most of which was in October
Facebook post reach in the last 28 days was over 4000 (post engagements 1.613) and above 7000 in October.
Family Focus
Hello Camille from Belgium !
In October, her family shares their story about the impact of diagnosis. We would like to give the stories a focus each month.
We want to pay tribute to all the Rett families who fight Rett challenges every day. Thus, we will be sharing stories from families across Europe about their experiences of life with Rett syndrome. We hope you will find them inspiring, heart warming and moving. We also hope you will feel you are not alone in dealing with the challenges that this devastating disorder presents everyday. Together we are stronger.
INFO
Resources
Some Useful Resources for Families
Rett UK Family RoadshowWeek long event, key international speakers
Rettsyndrome.org Fantastic series of webinars for therapy and research interests
Series of Rett Education Discussion Group (a live, interactive session) reflections on Rett Education 2020 – Communicate, Educate, Advocate
Rett Resource Translated into: Croatian, Dutch, French, German, Lithuanian, Macedonian, Russian, Serbian, Swedish and Turkish
Rett Syndrome Russia A series of four new films starting with rehabilitation (dubbed in English)
Is your language missing? Feel free to contact us and discuss the details of translation
Networking
Global Rett Leaders Forum
New initiative from rettsyndrome.org – quarterly meetings of representatives from Rett associations across the globe. Three meetings so far – sharing information and updates via Hive Networked group
Presentations from Russia with their rehabilitation project, Italy with the AirRett Centre in Verona and Spain with communication support and training.
Request for funding support for RettBase – collaborative funding is sought to update this resource and transfer to Clinvar
Next Meeting in February is focused on transition from children to adult services
Networking
Other events
Rett UK Family Roadshow Mar 21 – President Becky Jenner presented about RSE work
New Initiative In Switzerland Nov 21 – Rett Mum wants to start a research centre and clinic there. Becky Jenner and Gill Townend presented at the launch event Cure Rett Research Centre, Zurich
EURORDISMembership meeting May 21, 2021 The conference was organized through 4 workshops. RSE was represented by Becky Jenner and Laura Kanapieniene
EURORDIS Online Digital School Webinar May 25, 2021 COMMUNITY ENGAGEMENT SKILLS Participated by Stella Peckary and Laura Kanapieniene
Scientific Advisory Board
Aims
To promote and support research (basic and applied) to improve the quality of life of people of all ages affected by Rett syndrome and their families.
To gather and disseminate up-to-date research information.
To promote multidisciplinary collaboration between countries within Europe and with other countries across the globe.
To share and promote best practice according to current available evidence.
More
Gillian Townend MRCSLT, PhD Chair Netherlands
Scientific Advisory Board
Members
Anne-Marie Bisgaard, MD, PhDDenmark
Bernd Wilken, MDGermany
Aglaia Vignoli, MD Italy
Ana Abdala, PhDEngland
Bojana Milanov, MDRSE Board Member Serbia
Danijela Szili, PhDHungary
Meir Lotan, MScPT, PhDIsrael
Michelle Stahlhut, PT, PhDDenmark
Peter Marschik, DPhil, PhDGermany
Sonia Guil, PhDSpain
Helena Wandin, SLT, PhDSweden
Jean-Christophe Roux, PhDFrance
Financial Report
2020
Financial Report
2020
Neusiedl am See (Austria), 09.10.2021 Stella Peckary, Treasurer RSE Approved for the discharge of the Treasurer and the Executive Board of RSE by Elisabeth Nimmerrichter (ÖRSG)
10
Future plans
As discussed in GA
Thank you for your attention and support over the past few years