News

Trustee Karen Hughes attends first European Idiopathic Pulmonary Fibrosis Federation meeting in Brussels

Last week Karen Hughes, one of the charity’s trustees, attended the first General Assembly Meeting of the EU-IPFF (European Idiopathic Pulmonary Fibrosis Federation) to represent Action for Pulmonary Fibrosis in the UK. 11 members attended from 9 European countries to discuss the next action to be taken to support and reinforce the points made in the […]

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100 Genomes Project research interview

The 100,000 Genomes project is an initiative funded by the Department of Health and will sequence 100,000 genomes from around 70,000 people. Participants are NHS patients with a rare disease, such as pulmonary fibrosis, plus their families. Researchers at Oxford University are looking to interview people who have been invited to take part in the […]

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IPF Patient Questionnaire

Are you an IPF patient and would you like to help? Anne-Marie Russell, an IPF researcher at Imperial College, London has developed a patient centred questionnaire specifically for people who have a diagnosis of IPF and is asking for your help. All the statements included in the questionnaire have been collected from patients, family / […]

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Scottish Medicines Consortium has approved Nintedanib for Idiopathic Pulmonary Fibrosis patients in Scotland

The Scottish Medicines Consortium (SMC) has today announced that the drug Nintedanib has been approved for Idiopathic Pulmonary Fibrosis patients in Scotland. Action for Pulmonary Fibrosis contributed to the appraisal process by written submission and by the Chairman, Mike Bray, attending a key meeting in Glasgow as a patient expert in order to give evidence […]

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Bumper cheque from Hull IPF Support Group

We are thrilled and honoured to have received a wonderful donation of £2,000 from the Hull IPF Support Group. The – literally! – bumper cheque was presented to our trustee, Wendy Dickinson, by Specialist Respiratory Nurse Mark Major and Dr Simon Hart, consultant physician.

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