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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

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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

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35,000

Our Goal: 35,000 signatures

11,978

Up to Now

Last update: 25/08/2016. Counter updated every 15 days.

Members

Written Declaration 26 on IPF is adopted!

Written Declaration 26 on IPF is adopted!

The European Idiopathic Pulmonary Fibrosis and related disorders federation (EU-IPFF) has promoted the Written Declaration 26/2016 on idiopathic pulmonary fibrosis which has been formally adopted this week by the European Parliament with 388 signatures. It was presented on the 11th of April 2016 by 16 Members of the European Parliament [...]

Latest From The Blog

Written Declaration 26 on IPF is adopted!

The European Idiopathic Pulmonary Fibrosis and related disorders federation (EU-IPFF) has promoted the Written Declaration 26/2016 on idiopathic pulmonary fibrosis which has been formally adopted this week by the European Parliament with 388 signatures. It was presented on the 11th of April 2016 by 16 Members of the European Parliament [...]

Status of the Written Declaration on IPF

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 [...]

16 Members of the European Parliament presented a written declaration

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 [...]

IPF as a rare disease. The Italian Parliament voted

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 [...]

Forthcoming review of the Italian National Plan for Rare Diseases

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 [...]

IPF patients and experts at Italian Parliament

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 [...]