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 [...]
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 [...]
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 [...]
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 [...]
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), [...]
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 [...]
Patient Groups join together to form a Federation dedicated to IPF
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
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
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
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 [...]
IPF World Week 2015 – Photo Contest
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 [...]