Developing an IPF Patient Group in the UK

Developing an IPF
Patient Group in the UK
Helen Parfrey
Geraldine Burge
IPF Patient Group
S Is there a need for a UK group?
S What are the benefits of a patient group?
S What are the practical issues for establishing a
patient group?
The benefits and barriers to
establishing a patient group
Fear of meeting people with more
severe disease
Support for patients and carers
Forum for families to discuss experiences
Ability to travel to group
Education for patients and healthcare workers
Little incentive to get involved with a
patient group due to a lack of
recommended treatments
Involvement in patient
groups is at the
discretion of the
individual patient
Promote awareness of IPF
Identify needs
Practical issues for setting up a
patient group
S Clearly defined aims and objectives
S Methods of communication
S Charitable status
S Independent group or partnership with existing organisation
S Integrate with other pulmonary fibrosis groups
Objectives to be patient focused
S Support
S Education
S Research – clinical trials network, scientific committee
S Raising awareness – lobbying, media, IPF day
S Social and recreational activities
S Fundraising activities
S Website
S Newsletter
S Leaflets
S Patient Information Days
S Local group meetings
What is needed to set up a
patient group?
S People to set up and run the group
S Register for charity status (income ≥ £5000)
S Voluntary organisation
S Benefit to the public
S Objectives comply with charities act
S Trustees
S Governing document
S Marketing - name, brand, logo
S How to raise funds for running charity?
What resources already
Challenges to face
S Demonstrate need for patient group
S Considered rare disease
S Number of people with IPF
S Maintain momentum
S Financial constraints
Is there the need for an
IPF patient group?

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