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Developing an IPF Patient Group in the

UKHelen Parfrey

Geraldine Burge

IPF Patient Group

Is there a need for a UK group?

What are the benefits of a patient group?

What are the practical issues for establishing a patient group?

Support for patients and carers

Forum for families to discuss experiences

Education for patients and healthcare workers

Promote awareness of IPF

Identify needs

The benefits and barriers to establishing a patient group

Involvement in patient groups is at the discretion of the individual patient

Fear of meeting people with more severe disease

Little incentive to get involved with a patient group due to a lack of recommended

treatments

Ability to travel to group meeting

Practical issues for setting up a patient group

Clearly defined aims and objectives

Methods of communication

Charitable status

Independent group or partnership with existing organisation

Integrate with other pulmonary fibrosis groups

Objectives to be patient focused

Support

Education

Research – clinical trials network, scientific committee

Raising awareness – lobbying, media, IPF day

Social and recreational activities

Fundraising activities

Communication

Website

Newsletter

Leaflets

Patient Information Days

Local group meetings

What is needed to set up a patient group?

People to set up and run the group

Register for charity status (income ≥ £5000) Voluntary organisation Benefit to the public Objectives comply with charities act Trustees Governing document

Marketing - name, brand, logo

How to raise funds for running charity?

What resources already available?

Challenges to face

Demonstrate need for patient group

Considered rare disease

Number of people with IPF

Maintain momentum

Financial constraints

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Is there the need for an IPF patient

group?