Developing an IPF Patient Group in the UK
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Transcript of Developing an IPF Patient Group in the UK
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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?