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: 16/05/2016. Counter updated every 15 days.
Latest From The Blog
Status of the Written Declaration on IPF: the official count is now at 111 signatures of MEPs (as of 19th of May). The French and German patient association representatives gave their support in gathering signatures during last week’s activity in Strasbourg. We will now continue to engage as many MEPs [...]
On 11 April 2016, 16 Members of the European Parliament from 9 EU Member States presented a written declaration 26/2016 on idiopathic pulmonary fibrosis during a plenary session of the European Parliament. The Written Declaration is open for signature until 11 July 2016 and your support, in the form of [...]
The Italian Parliament voted the motion that recognises Idiopathic Pulmonary Fibrosis (IPF) as a rare disease IPF is going to be included in the forthcoming review of the Italian National Plan for Rare Diseases, a historical achievement that gives hope for a better future to patients, relatives and healthcare professionals. In [...]
ITALY, April 2016 – After the success of the presentation of the European IPF Patient Charter to the national political decision-makers, we have achieved an important result: the motion presented by Mr. Pierpaolo Vargiu (photo), Member of the Chamber, has been approved unanimously in the Italian National Low Chamber. This [...]
Rome, 2016 March 1st. A key event promoted by AMA Fuori Dal Buio has taken place at the Chamber of Deputies – Sala del Refettorio: “Idiopathic Pulmonary Fibrosis patients’ right to be diagnosed and to access treatment. The European IPF Charter and the importance to recognize IPF as [...]
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 [...]