Guy Hodgson Office Manager

Who are EDS UK are and what do we do? More information on the BLF Questions from you

Who are EDS UK? Office Volunteers Trustees Support Volunteers Staff Medical Advisory Panel Corporate Partners Consultants Area Coordinators

Trustees, staff & consultants

Support volunteers Parents Coordinator Sarah Griffin Partners Coordinator Matt Hillman Elders Coordinator Angela Hunter Child Protection Specialist Sharon Birch Mens Coordinator Robin Hoskins Communities Coordinator Julie Wilkes

What do we do? Fundraise Helpline Awareness Membership Medical Research Support Lobby Local Meetings

In July 2014 changed to The Ehlers-Danlos Support UK Is a registered Charity and Company Employment law Home visits Expenses and receipts Data protection Communication Service to members Have the Information Standard Where can I find financial information on EDS UK? More info about EDS UK

So….how important are you to our members ?

Use of Facebook? 2015 September Survey 71% use the Facebook groups 88% less isolated 85% more supported 70% more engaged with the community 81% more emotionally supported 1. Advice for yourself 2. Peer support 3. Support from EDS UK 4. Emotional support Top 5 reasons for using closed Facebook Groups 5. Area specific questions

Support Group Meetings 2015 September Survey 34% attend Support group meetings 84% less isolated 85% more supported 78% more emotionally supported 70% more engaged with the community One – 43% Two – 28% Three – 9% Four or more – 20% How many meetings have you attended in the last 12 months Distance Reasons for not attending Disappointed by previous meeting No meeting booked yet Meetings cancelled Feel depressed seeing others with the condition Not given enough notification of the meeting

Support Group Meeting feedback 2015 September Survey It was amazing to meet with like-minded and like-bodied people, who understood! I didn't have the usual explanations to perform; they knew immediately. It was marvellous to share all sorts of things which are impossible to find from doctors (who haven't the first clue) or any NHS facilities: how people react to certain medications; how successful surgeries have been; how to contact specialists for particular areas of need; whether the latest symptoms are related to EDS; how to manage......it is a lifeline and, although I have only recently begun to go, I am putting it as priority in my diary: that's what I will give my daily energy ration for. It's gold dust for me. I can't thank you enough.

So….how important are you to our members? Friendship Supportive Determination Networking Informative Empowering

How much is the grant? What can it be spent on? What parts of the UK does it cover? How long is it for? What will the grant achieve? Community matters project

Outcome 1: People with EDS regularly attending local support groups 350 people People with EDS that are members of local groups and 1,500 people accessing online and/or other forms of peer support People with EDS report feeling less isolated and more 80% of 1,500 engaged in their community people Outcome 2: People with EDS report better understanding of managing 80% of 1,500 their health through gentle exercise and healthy eating people People with EDS report participating in physical exercise 50% of 1,500 at least once per week people People with EDS report feeling healthier and more active 50% of 1,500

Outcome 3: People with EDS regularly volunteering 50 people Project volunteers reporting they have developed new skills 80% of 100 people Project activities to achieve by end of year 4 45 local EDS support groups around England reaching 350 people through monthly meetings and 1,500 through providing moderated online group forums and / telephone support. Provide comprehensive training and ongoing support to 50 Volunteer Area Coordinators and Volunteer Assistants Hold 12 family days enabling over 1100 parents and children to meet up and share experiences with others who are experiencing similar

Any questions?