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Why patient groups need good leadership

The small size of most patient organisations– Patient groups are often small organisations or charities that are growing constantly. They need good leadership to define the direction of growth and develop a strategy that they will convince and inspire others to support.

Communication and collaboration- As patient groups often operate within the wider rare disease community, a confident communicator makes a good leader as they are equipped to forge relationships and drive collaboration to push forward the work of the community.

Challenging circumstances– Smaller charities exist within the context of the social services sector, this means their voice as a small charity can sometimes be drowned out by larger organisations. Smaller organisations therefore need a leader who is prepared to speak up and get their voice heard.

A positive image– a good leader acts as a professional representative for the organisation. This is important for patient groups wanting to establish relationships with corporate partners, clinical services and pharmaceutical companies.

Skills needed for leading a patient group

Emotional intelligence– A patient group leader must be able to understand emotional differences and responses and empathise with different people’s needs

Organisation A patient group leader must be organised in order for progress to be made and goals to be reached.

Time management– It is very important that a patient group leader is good at managing the position alongside a personal life, work and family commitments.

Delegation– A good patient group leader should recognise that they cannot be good at everything or do everything. Instead they must effectively utilise the skill set within their team.

Project management– Good project management allows for the effective completion of plans and keeps initiatives on track along with targets.

Resilience– Patient group leaders should be able to cope with the challenge of leading a small organisation and maintain enthusiasm in the face of adversities.

Prioritisation– A key skill of a good leader is the ability to know where is best to direct the attention of the patient group and what direction is most relevant to the group’s goals.