Idiopathic Pulmonary Fibrosis (IPF) is a chronic, progressive, unpredictable and ultimately fatal lung disease
The European IPF Patient Charter calls for greater awareness of IPF and for better access to care in European countries
SIGN THE CHARTER
The European IPF Patient Charter calls for greater awareness of IPF and for better access to care in European countries. The Charter lays down recommendations that, if adopted, would ensure improvements in IPF patients’ quality of life, whilst supporting efforts to find a cure.
currently, between 80,000 and 111,000 people are living with Idiopathic Pulmonary Fibrosis in Europe. This fatal condition has been around for decades, yet there is no cure and only limited treatment available. IPF often develops rapidly and many patients are given a survival time of just two to five years. Each year around 35,000 people in Europe are newly diagnosed with IPF, with this number likely to increase in the future.
European IPF Patient Organisations call for patients and their families to have consistent and fair rights to:
1) Early and accurate diagnosis
2) Equal access to care
3) A holistic approach to standardise IPF management
4) Comprehensive and high quality information about the condition
5) Better access to palliative care and end-of-life care
Our Goal: 35,000 signatures
Up to Now
Last update: 02/01/2017
Written Declaration 26 on IPF is adopted!
Latest From The Blog
Patient Groups join together to form a Federation dedicated to Idiopathic Pulmonary Fibrosis & Related Disorders Brussels, Belgium, 22 February 2016 Patient groups from nine European countries have come together to establish the European Idiopathic Pulmonary Fibrosis & Related Disorders Federation (EU-IPFF) in order to defend the interests of European patients with [...]
March, 1st 2016, the IPF Patient Charter in Rome. “Idiopathic Pulmonary Fibrosis patients’ right to be diagnosed and to access treatment” On March, 1st 2016, a key event promoted by AMA Fuori Dal Buio will take place, at 10.30 a.m. at the Chamber of Deputies – Sala del Refettorio [...]
Healthcare professionals and IPF Patient organisations work hand-in-hand to shed light on the inequalities and unmet needs in IPF care across Europe On 19 November the European Respiratory Journal has published an article entitled “European IPF Patient Charter: unmet needs and a call to action for healthcare policymakers” which outlines [...]
IPF Groups organise the second European Parliament Roundtable entitled “Breath of Hope: Giving a future to patients living with rare pulmonary diseases” on 15 September 2015. Following the formal launch of the European Idiopathic Pulmonary Fibrosis (IPF) Patient Charter in the European Parliament in September 2014, national IPF patient associations [...]
The theme: “Blowing soap bubbles”. Deadline: July 22nd, 2015. Towards the IPF World Week (5-11 October 2015) The Idiopathic Pulmonary Fibrosis Week was created in 2012 as an initiative to inform people around the globe that Idiopathic Pulmonary Fibrosis (IPF) is a rare and poorly understood chronic and ultimately fatal lung [...]