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2020 Members Survey

2020 Members Survey 

Annabelle's Challenge Member Survey

92 members responded to our survey during Q1 2020 giving us valuable feedback on how the charity is doing and to gather information on focus areas requiring attention or improvement. 

Using this information and the comments provided we restructured some of our services, unfortunately due to the UK lockdown on 23 March 2020 some services where impacted heavily including postponing regional support groups and the vEDS Conference.

2. How many years ago were you/they diagnosed with vascular EDS?

3. In your opinion, do you feel that the charity could improve/increase the support it provides the vEDS community in any of these areas:

4. In the past 12 months, have you engaged and/or communicated with Annabelle's Challenge through any of the following sources?

5. Overall how would you rate the ease of communicating with Annabelle's Challenge and the response given?

6. Are there any reasons you do not access some or all of the support services offered by Annabelle's Challenge?

8. Thinking about future services and events, which of the following do you feel will be of benefit to you?

9. Post diagnosis, please confirm who is currently providing support to you:

10. Please confirm the age group of the patient in this survey:

Actions being taken by the charity

The results of the survey and feedback has enabled the charity to review the support currently offered and looked at ways to further improve what we do.

Subject to securing additional funding the following actions have/will be taken to better serve our community:
  • Develop the role of Patient Coordinator.
  • Increase the hours of support. 
  • Improve the Family Support Programme.
  • Host a conference and family weekend.
  • Refer 'non EDS clinic' patients to the EDS Service.
  • Improve support for children.
  • Increase resources on social media and awareness. 
  • Recruit volunteer area coordinators.
  • Launch regional support groups.
  • Fund Research.
Challenge 2025
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