Today is Rare Disease Day – a day where the main objective is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. Today we are very proud to launch, as part of our new website, the Voice of the Patient blog and video blog series from charity […]
National Institute for Health and Care Excellence (NICE) announce the approval of Nintedanib drug for the treatment of pulmonary fibrosis
Action for Pulmonary Fibrosis (APF) is very pleased that NICE has announced the approval of Nintedanib, for the treatment of patients with IPF in England and Wales. The drug will be available on the same basis as Pirfendone so will provide an alternative therapy. It is already approved in Scotland.
Action for Pulmonary Fibrosis would like to support researchers working in pulmonary fibrosis to attend the ATS 2016 in San Francisco. The awards of £750 contribute towards costs for conference registration, accommodation and travel. We have three awards available.
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 […]
It is becoming apparent that up to 30% of pulmonary fibrosis patients’ have an inherited component to their disease. Drs Jenkins and Parfrey, two of our trustees – are leaders in the field of IPF research in the UK – and are involved in research studies investigating the genetics of IPF as part of the […]
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 / […]
The pharmaceutical company Boehringer Ingelheim is conducting a poll of IPF patients and family members to explore the reality of living with IPF. It is called ‘When I think of IPF, I think of…’ and is an anonymous 8 question poll.
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 […]
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.
Four specialist care rooms at Nottingham City Hospital sponsored by Action for Pulmonary Fibrosis unveiled for IPF World Week
Mike Bray, chairman of Action for Pulmonary Fibrosis, cut the ribbon to officially open four new specialist care rooms for people with IPF at Nottingham City Hospital this week. The four new APF Supportive Care Rooms on Fleming Ward have been sponsored by Action for Pulmonary Fibrosis and will enable patients to be admitted directly […]