Decide what you want to achieve with your group, set clear goals, define an action plan and strategy

Make it easy to join your federation (you could make a difference between inviting organizations to receive info and take part in activities and being a paying member) – be inclusive rather then exclusive (you want to represent and involve as many patients and families as possible)

Have something essential to offer to national patient groups and medical and scientific organizations and communicate clearly what you can offer and how

Be present on all European platforms related to your disease (e.g. conferences, websites…)

Use existing platforms to bring people together, e.g. scientific/medical conferences, rare disease (Eurordis) meetings

Easier to get people together (some may want to participate in the other meeting anyway)

  • Cheaper
  • Visibility

Work together with health care professionals

  • Many goals are common goals
  • They know who is or could be active in the field
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