The MDS Foundation Support Group Guidelines

The purpose of a Support Group is to bring individuals together to meet others with similar challenges, discuss feelings, gather information, and socialize.

Here are some ideas on how you can start your own active and thriving support group:

Planning the Meeting:

  • Locate meeting place, determine date and time. Most libraries, churches, and hospitals have meeting rooms that are often free to non-profit groups.
  • Book guest speaker (specialist from one of the MDS Centers of Excellence). They will speak for free if you ask them. The Foundation is happy to help you in any way.
  • Place posters or make up flyers to post in doctor’s offices, pharmacies, on hospital bulletin boards, libraries, church halls, grocery stores, etc.
  • Advertise the group in local newspapers, most newspapers have a health section with a datebook, calendar or an area for support groups. It’s a free service the paper offers.
  • Get local newspapers to write stories on myelodysplastic syndromes and health newspapers.
  • Local hospitals have a health calendar, call hospitals and get on their list of support groups.
  • Post information about your support group on The MDS Foundation website.
  • The MDS Foundation may mail invitations to all known MDS patients and their families. Note that these lists are confidential.
  • Contact The MDS Foundation for patient information handouts.
  • Plan refreshments

Suggested Format for the Meeting:

You may select a group facilitator (the MDS Foundation will be happy to assist you) in advance. The facilitator will welcome everyone to the meeting and asks those in attendance to introduce themselves.

The facilitator will then introduce the guest speaker who will provide a short presentation about MDS, The MDS Foundation, the programs and services available, and the structure and benefits of forming a Support Group.

Hold a facilitated question and answer period following this presentation. Issues that you will want to cover include:

  • What are the main areas the Support Group should concentrate on? For instance:
    • Information forums
    • Support meetings
    • Assisting individuals to access services and treatments
    • Fundraising to help raise funds for research and patient services
    • Public awareness events
    • Buddy scheme – to help newly diagnosed patients and their families
  • Who is available to assist with organizing/conducting these services and events?

After the participants have decided to form a group, complete and send the Application to Establish a Support Group to the MDS Foundation. The Board of Directors will grant the group official status at its next meeting.

The Group may set its next meeting date and begin to meet informally before official status is granted.

Position Description

Support Group Facilitator

Overview: The Facilitator of Support Group meetings is responsible for the monthly operation of the meetings. The support group facilitator is there to guide the group, stimulate discussion, manage the group dynamics, and encourage interaction.


  • Arranges meeting place.
  • Identifies topics for meetings.
  • Coordinates speakers as required.
  • Introduces and thanks speakers at meetings.
  • Provides for refreshments.
  • Ensures security of location.
  • Provides information to the MDS Foundation for newsworthy items, as required.

Suggestion for time Required:

  • One meeting per month (approx. two hours/month)
  • Speaker coordination (approx. two hours/month)

Suggested Meeting Activities:

  • Hold sessions for caregivers to discuss their concerns, issues, frustrations and share ideas for rest, relaxation and coping with stress.
  • Organize a respite day for caregivers.
  • Arrange for volunteers or fellow caregivers who are willing to share caregiving responsibilities in order to relieve others.
  • Discuss available resources — government programs, transportation, respite programs, community hospices, life insurance, travel insurance.
  • Discuss the fear of dying and coping with what lies ahead both for the patient and his/her family.
  • Discuss research updates (invite a hematologist, researcher or drug company representative). (Note: Caution the speaker not to recommend a certain therapy or drug to individual/s.)
  • Hold a video/book review evening. Ask participants to review a book or video and present to the group.

Support Groups Evaluation

Ongoing evaluation of a Support Group is imperative to keep it fresh and up-to-date. When you pick a speaker and topic for a meeting discuss the objective with the speaker then set some goals for what information is to be imparted. From those goals, develop a quick evaluation form to be completed at the end of the meeting. This feedback will help to set the agenda for the next meeting, which covers this topic.

Remember . . .

The Support Group is there to support those living with MDS and their families. Don’t be afraid to survey them to find out what they would like to discuss or learn during a meeting.

It is worth noting that not all of the following topics will be appropriate for all participants. For instance, talking about death and dying may upset newly diagnosed individuals.

Support Group – taking it further – creating a national group

  • 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
    10. You may not identify all of these people at your first meeting – some members may have to take on several roles until a suitable candidate is found later on.
    11. 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 Foundation 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 Foundation 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.

Finally – don’t get too frustrated at slow progress of the group – 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.


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