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EU-IPFF launches the first European Consultation Guide on Idiopathic Pulmonary Fibrosis

September 27th, 2017|

Brussels, Belgium : The European Idiopathic Pulmonary Fibrosis; The 16 September 2017 Related Disorders Federation (EU-IPFF) published the first ever European Consultation Guide on Idiopathic Pulmonary Fibrosis (IPF), a rare, progressive and irreversible lung disease [...]

Listen for the Sounds of IPF website

September 27th, 2017|

Listen for the Sounds of IPF is a global awareness campaign highlighting the importance of recognising early signs & symptoms of Idiopathic Pulmonary Fibrosis (IPF) and of accelerating patient referral to a respiratory specialist. » [...]

Written Declaration 26 on IPF is adopted!

July 14th, 2016|

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 [...]

Status of the Written Declaration on IPF

May 20th, 2016|

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 [...]

16 Members of the European Parliament presented a written declaration

May 17th, 2016|

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 [...]

IPF as a rare disease. The Italian Parliament voted

April 22nd, 2016|

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 [...]

Forthcoming review of the Italian National Plan for Rare Diseases

April 8th, 2016|

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), [...]

IPF patients and experts at Italian Parliament

March 17th, 2016|

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 [...]

Patient Groups join together to form a Federation dedicated to IPF

February 22nd, 2016|

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 [...]

The IPF Patient Charter in Rome

February 17th, 2016|

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 [...]

ERS Journal publishes an article on the European IPF Patient Charter

November 26th, 2015|

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 [...]

Giving a future to patients living with rare pulmonary diseases

November 26th, 2015|

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 [...]