1. Using social media to support our members Erin Simons erin@ehlers-danlos.org

2. Contents Adding members to the group Creating events Pinning posts Tagging members Creating conversation Facebook group features Finding & sharing content What online support do EDS UK offer? What can be shared from the EDS UK website? Working together Next steps

3. Adding members To add new members to a group: Go to the group Click the + Add People to Group field in the right column. Click invite by email to add their email address Check member’s list to see if those requested are members Confirm with sarah@ehlers-danlos.org if concernedsarah@ehlers-danlos.org

4. Creating an event As an admin you can create an event for your meeting. This will then automatically invite all of the people who are in your Facebook group. To create an event: Click Events on the top of your group page. Click Create in the top right. Fill in the event name details, location & time Click Create.

5. Creating an event Ensure your event has the correct start time and finish time and date. Update this if it must change prior to the event – all those who have accepted will be notified but please post on the wall and tag all members to ensure they have seen it.

6. Tagging members To tag a member simply write @ followed by their name. It should appear automatically as you are writing, simply select and click to add their name to your post. If you can no longer select a member’s name it means they have left the Facebook group. Example: Hello @fionaedden @caitrionagraham just to let you know that the event will now be held at 1:15pm.

7. Adding a cover image Add a cover image to make your event stand out. Standard cover images are available from erin@ehlers-danlos.org These can be kept on your desktop to upload.erin@ehlers-danlos.org

8. Pinning Posts Pin events to the top of the page or important posts to inform new members and remind those visiting the page. To pin a post click on the right hand side v on the selected post. Select ‘pin post’ from the dropdown list.

9. Uploading a file Meeting notes, fundraising posters and any file can be uploaded to the group – all members can download these. To add a file to a group: Go to a group and click Add File at the top Click Choose File to select a file from your computer or Dropbox Choose to say something about your file and then click Post Keep in mind links to Dropbox files can be shared outside of the group.

10. Creating conversation It can often be hard to think of ideas! Monthly topics will be provided to help you know what the discuss. We have a number of resources on pain, self management of EDS and are happy to help you source ideas each month. Alongside the monthly topics each month we will send a number of websites and links to get you started!

11. Creating a poll Useful for finding suitable meeting dates or for generating ideas for meetings or fundraisers. How to Publish a Poll Add Questions. Type your question and then add answers. From this point you can simply hit create poll. Set Options. On the Themes tab select one of our default themes or create your own. Share with your group.

12. Finding & sharing content The main EDS UK Facebook page www.facebook.com/ehlersdanlosuk is updated on a daily basis. All posts on this page can be shared into your groups. To do this click ‘share’ on the post then select ‘share in a group’ and select your group from the list of groups you are part of. www.facebook.com/ehlersdanlosuk

13. Finding & sharing content The fact photos have been added to one album to allow you to share these with your groups: http://bit.ly/EDSfactshttp://bit.ly/EDSfacts

14. What online support does EDS UK offer? We have a number of support groups for members. Alongside the local groups we also have: Parents Partners Men’s Rarer types of EDS (commencing November) Siblings (commencing November) Young people (13-18)

15. What can be shared from the EDS UK website? Conference Videos from the Residential conferences from 2012-2014 Managing your EDS presentations from Stanmore Your child and EDS presentations Managing your EDS section – what resources can we add to this? Medical information – what resources have members requested? Living with EDS stories

16. Working together I would love to hear all of the latest news from you and your members! I am contactable on erin@ehlers-danlos.org and am always keen to share: erin@ehlers-danlos.org Positive achievements Fundraising efforts Short stories and blog style posts on EDS and life at school, university and work Details on your local services, what is offered in your area for patients with all types of EDS FAQ’s from your members, any suggestions on resources