1. Ian Mackersie and Emma Woodward aHUSUK 22June 2013 Forming a support group for patients with MPGN/DDD/C3G

2. 1 What do you want a support group to do? Support patients and families – how? Spread the word – where? Increase awareness of disease – among whom? Raise funds –how? Campaign – about what?

3. 2 Have clear objectives Objectives must be realistic and achievable for charitable purposes Strategic objectives might be support people with MPGN support their families and carers educate public and clinicians about the condition Will also need operational objectives

4. 3 Possible structure Unincorporated Charitable Association Must have charitable aims Must be exclusively for public benefit Unincorporated - unlimited personal liability of trustees Subject to civil law and Charities Acts If annual income over £5000 - must register with Charity Commission for England & Wales (CCEW) Regulated by CCEW Use CCEW model constitution Possible to incroporte as Charitable Incorporated Organisation (CIO)

5. 4 Elect trustees and management Charity run by board of trustees elected annually Minimum 3 officers – Chair, Secretary, and Treasurer Experience of voluntary sector, public sector (esp healthcare) or business useful Suggest no more than 10 trustees Even and fair distribution of work among trustees Defined responsibilities and accountabilities Setup will require much additional work Think of a good name

6. 5 Attract and involve members Members are lifeblood and future trustees Adopt simple and wide criteria Recruit as many as you can Create inclusive atmosphere Respect any who do not want to be active Members bring good ideas and are essential to campaigns Combine AGM with conference, speakers and expert panel

7. 6 Networking People often prepared to help charities Use contacts but watch for nepotism, favouritism and possible conflicts of interest Develop friendly links with clinicians, politicians, journalists and other media folk, NHS management, pharmaceutical companies and rare disease groups Be aware they all have a different agenda but be aware that they may have a different agenda Join associations and get invited to things

8. 7 Use electronic media Website essential - can be as sophisticated or as plain as you like to start Control of material going out in your name on website and social media essential Remember not all members have access to internet or social media

9. 8 Think about funding Collections, grants, donations, legacies, merchandise, sponsorship, events and grant aid are all potential sources of income Raising significant money by these means is hard Many support groups take unconditional grants from pharmaceutical companies Concentrate on funding own costs and expenses, leave expensive research funding to others

10. 9 Behave with integrity and honesty Protect and promote your reputation Ensure decisions made ethically and independently Be open and accountable Identify and manage conflicts of interest Do not take a party political line Act in best interest of patients at all times Consider wider effect of actions

11. Thank you and good luck… why not start today?