Support Group: Taking it further – Creating a National Group

Stage 1

  • Start with setting up 1 patient forum day in your own city/hospital
  • Invite your local nurse/physician – maybe also your GP
  • Invite nurses from other regions, who will also advertise the forum in their own hospital

At the Patient Forum – set aside time for the following:

· Identify patients, family members, friends willing to contribute to a long-term patient group

· Elect the following people (if possible):

  1. Chairman
  2. Deputy Chairman
  3. Secretary/contact person
  4. Treasurer
  5. Webmanager
  6. Scientific Consultant
  7. Nurse Consultant
  8. Newsletter editor
  9. Fundraiser

You may not identify all people at the first meeting – some members may have to take on several roles until a suitable candidate is found later on.

3 or 4 people are enough to start the Committee for a support group.

  • Set up regular committee meetings to discuss future plans
  • Establish priorities for your own region/country
  • Plan expenses and costs for the year
  • Get charity status for your group
  • Create a leaflet for distribution in your country’s hospitals
  • Request stock of information booklets in your language from MDS Alliance or other main members for distribution to patients who request information.

Stage 2

  • Involve caregivers, relatives, friends, colleagues – all may have time and good ideas – as well as energy.
  • Anyone willing to help – ask them for their skills and contacts – they may have connections in the printing industry, catering, event organizing etc
  • Establish contacts to the pharmaceutical industry – they are a great resource for information, assistance, contacts – but make sure you follow ethical guidelines for your own country – and do feel free to say no to suggestions if they are not suitable for your group. Nobody will be offended. Feel free to check with the MDS Alliance for feedback and additional advice if you are unsure.
  • Plan fundraising activities to pay for future patient forum events
  • Consider appointing a Patient Liaison person – or someone willing to take on this role part-time (some groups work very well on that basis – having someone available for a few hours a week)
  • If relevant for your own country – and part of your priorities – establish contacts with the people in Government responsible for health, access to treatment, cancer issues etc.
  • Establish contacts with European groups such as ECPC – European Cancer Patient Coalition and EPF – European Patient Forum, Eurordis, Rare cancers groups in your own country.

Finally – don’t get frustrated at slow progress – or lack of immediate volunteers – it takes time to find the right members and the right contacts – but it will happen.

Other groups in various countries are proof it can work.

Don’t give up – as it represents invaluable help for many people – and the patient voice and patient choices are becoming very important.