forming a support group for patients with mpgn ddd c3g
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Forming a support group for patients with MPGN/DDD/C3G . Ian Mackersie and Emma Woodward aHUSUK 22June 2013 . 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?

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forming a support group for patients with mpgn ddd c3g

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

Ian Mackersie and Emma Woodward

aHUSUK

22June 2013

1 what do you want a support group to do
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?
2 have clear objectives
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
3 possible structure
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)
4 elect trustees and management
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
5 attract and involve members
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
6 networking
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
7 use electronic media
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
8 think about funding
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
9 behave with integrity and honesty
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
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