1. The Ehlers-Danlos Support UK How to run a successful meeting!

2. THANK YOU! Don’t forget to use me for support. For giving up your time to support EDS UK, to support your local area and to support those who need it.

3. What are we going to cover?  Let’s brain storm  Venues  Getting Started  Organisation  Contact  Meeting  Promotion  Feedback  Support  Questions

4. Lets brain storm! MEETINGS Venue Positivity Attendees Organisation Contact Planning and agenda Support Promotion Support for you

5. Getting started. Congratulations you are now an Area Coordinator, welcome to the team! I’ll be doing the following: Introducing you to the EDS community Adding you to relevant FB pages as admin Signing you up to online training Sending you information on your area Asking for a ‘blurb’ and photo Sending you previous meeting information Remember – there’s no such thing as a silly question

6. Let’s look at venues Disabled access Disabled toilet Water (refreshments) Accessibility Easy to find on a map/satnav Accessible by public transport Avoid single track lanes Where? Where are most people based Getting there Lift sharing Area £30 per meeting Can be spent on refreshments Ensure it’s used Cost Community rooms, libraries and village halls. AVOID – pubs: topics of a sensitive nature need to be discussed in closed environments

7. CONTACT and COMMUNICATION Contact Contacting myself, contacting members and contact from members and myself Communication Through email, Facebook, letters, text, phone calls and skype Support is crucial and this is achieved through communication Communication is key for support Communicate changes, updates and general information regularly Keep in contact with myself – lets catch up Use all the contact methods you have available Check the FB pages regularly Members receive information on their latest meeting – by  Letter  Email  Facebook event

8. Organisation and planning Have I got everything I need Have I got the supporting information? The latest agenda, newsletter and supporting information Do I need any more resources? I would like to hand out leaflets – contact the office in advance How to I let my members know Get in touch with Sarah and Michelle Let us know details of the time, date and venue Create events Lets share the good news – email, letters and Facebook What do I need to arrange a meeting Have I found a venue? Where is it, how do I get there and do I need to invoice EDS UK? Is it suitable? Does it have disabled access, refreshments and is it easy to find?

9. It’s time! Do I know a rough estimate of numbers? Do I have an agenda with me? Am I on time Am I prepared mentally Details Are there enough seats What seating arrangement shall I have Am I standing, sitting or both? The room Meet and greet Allow members to mingle Allow them to relax into their environment Encourage talk – conversation starters Arrival

10. Rules and Agenda Agenda – following an agenda helps give structure to the meeting and gives the members an idea of covered topics. Rules – asking all members to suggest rules before starting the meeting – including letting others speak Remembering this individual needs support so looking at another time for this to happen so that others benefit from the meeting Recently had problems with individuals dominating meetings – what can we do to resolve this?

11. Lets get to the meeting: Introductions – of yourself and those who are attending. Run through the agenda and rules (covered in the previous slide) giving everyone an idea of the meeting. Working through – boards, discussions, guest speaker and questions You’ve got everything you need and everyone is sat down…what next?

12. Positivity For yourself: You are running a supportive, important and exciting group! Those attending – let’s look at the positives. 1-3 Positives at the end of the group. The environment – comfortable, warm and welcoming. An important attitude!

13. That’s a wrap! Well done and thank you! Thank everyone for attending – people often like to chat after – allow a little time for this. Go home and relax! You’ve worked your way through the meeting and it’s been a success, what’s next?

14. Promoting Meetings Who you are and what you do is available on the website Letters, emails and Facebook events to hit every communication channel Leaflets and posters – ask us to send you more if you require them. Meetings are your hard work coming together – let’s get everyone involved.

15. 1. Support group meetings are there to offer support to our community – whether this be emotional, management or just a friendly face 2. I am here to support you, whether emotionally, with management or just a friendly face 3. Don’t forget to use us to channel for advice, queries and any issues that arise. Support

16. Feedback  After your meetings (first relax and unwind for as long as you need) – please fill in the feedback log which is emailed through each quarter.  I need to collect how many attendees, new attendees and old attendees are at meetings for the Big Lottery Fund.  Emails and phone calls are also great to hear about how your meeting went.  Let us know if there’s anything you need

17. QUESTIONS?