Forming a support group for patients with MPGN/DDD/C3G

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

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?