novità dal mondo della ricerca e degli organismi erogatori di servizi socio-sanitari
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 from 9 EU Member States.
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 as possible through our social media campaign, raise their awareness around the Written Declaration in Brussels and Strasbourg and ultimately continue this very good progress towards the goal of gathering 376 signatures.
The team will be present at the European Parliament and during the mini plenary held in Brussels next week Tuesday to Thursday (24-26 May 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 is open for signature until 11 July 2016 and your support, in the form of a signature for this declaration, can make a significant contribution in reaching its adoption.
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 this long process, patients’ associations have played a fundamental role, by informing people, raising awareness of the problem, helping patients and their families and bringing them together.