Download - Developing an IPF Patient Group in the UK
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Developing an IPF Patient Group in the
UKHelen Parfrey
Geraldine Burge
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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?
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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
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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
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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
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Communication
Website
Newsletter
Leaflets
Patient Information Days
Local group meetings
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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?
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What resources already available?
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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?