Building a stronger voice for IPF

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

Brussels, Belgium 16 September 2017: The European Idiopathic Pulmonary Fibrosis;

Related Disorders Federation (EU-IPFF) has today published the first ever European Consultation Guide on Idiopathic Pulmonary Fibrosis (IPF), a rare, progressive and irreversible lung disease that affects over 100,000 people in Europe.
Idiopathic Pulmonary Fibrosis can have a significant impact on patients’ quality of life.
Newly-diagnosed patients in particular need reliable, unbiased and accurate information about the disease. To this end, the EU-IPFF’s comprehensive Consultation Guide, compiled by its member organisations in collaboration with scientific experts of international repute, aims to improve patients’ care and strengthen the patient-physician relationship.
Commenting on the publication of this guide, Liam Galvin, Secretary of the EU-IPFF Secretary, noted that “It can be emotionally challenging for newly-diagnosed IPF patients to discuss IPF and understand how to live with the disease. With this new guide, we hope to provide such patients with all the information they might need in an easily-digestible way.”
While not intended to replace expert medical advice, this Consultation Guide provides educational information on the signs and symptoms of the disease, diagnostic tests, pharmacological and non-pharmacological treatment options, and tips for managing the disease and finding support. The Guide also include patient testimonials and stories from real patients, which may prove comforting or helpful for those learning to accept, and live with, their diagnosis.

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

Photo Contest 2017 Candidates

We're glad to publish candidates pictures for this new IPFWORLD contest! We will update very soon the two winners, which will be used for the IPF WORLD WEEK 2017 campaign. We really thank all the partecipants.

Read more: Photo Contest 2017 Candidates

IPF WORLD WEEK 2016 : Press Release

IPF WORLD WEEK: TOGETHER TO BREAK THE ISOLATION CREATED BY A DEVASTATING DISEASE

Brussels, Belgium, [19 September 2016] - For the first time since its establishment in July 2016, the European Idiopathic Pulmonary Fibrosis & Related Disorders Federation (EU-IPFF) and its member associations are celebrating IPF World Week together. Each year, during one week, Idiopathic Pulmonary Fibrosis (IPF) patient associations across the world join together to drive action for greater awareness of IPF, call for better access to care, and bring hope to those living with the disease.

This year, IPF World Week occurs from 17 to 25 September, immediately following the formal adoption of the Written Declaration on IPF by the European Parliament in Strasbourg. The Written Declaration aims to promote better cooperation between Member States to address existing health inequalities and promote research activities to find its cause and a cure. It encourages the European Commission and EU Member States to work together  to support timely access to treatment, to limit the delays in approval by national regulators of authorized medication, and to address the existing inequalities in access to lung transplantation. Following its adoption, the Declaration is forwarded to the European Commission and the European Council for a response to its requests.

To achieve the adoption of the Declaration and to increase awareness and raise the profile of IPF at a political level, EU-IPFF has been working together with various Members of the European Parliament (MEPs). “We have worked hard on the Written Declaration and thank Elena Gentile, who spearheaded the declaration with us. We are very grateful to all MEPs who signed the Written Declaration on IPF and listened to our personal testimonials. We hope to get positive feedback from the European Commission and European Council in order to provide hope for the diagnosed and newly diagnosed IPF patients in Europe” said Carlos Lines Millán, President of EU-IPFF. 

Elena Gentile, an Italian MEP acknowledged the importance of the Written Declaration. “Despite IPF being a rare disease, it is a disease that cannot be forgotten and patients, caregivers, healthcare professionals and politicians alike need to cooperate together to raise IPF’s profile. The Written Declaration is crucial to initiate a European wide discussion and it’s the stepping-stone of a productive political path for EU-IPFF.”

Following the initial success of the adopted Written Declaration on IPF, EU-IPFF invites all IPF patients, caregivers, healthcare professionals, politicians and the community at large to celebrate IPF World Week and join the federation in pushing forward the demands made in the Declaration.

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About the European Idiopathic Pulmonary Fibrosis & Related Disorders Federation (EU-IPFF)

EU-IPFF is a European federation of currently 11 national patient associations active in the field of IPF and related disorders. Its mission is twofold: on the one hand, the federation aims to serve as a trusted resource for the IPF community by raising awareness, providing disease education, advancing care, and supporting research for IPF. On the other hand, it defends the interests of IPF patients at European level, by fighting for equal access to treatment and information and ensuring exchange of information between national patient groups. To this end, EU-IPFF collaborates with physicians, medical organisations, people with IPF and their families, caregivers and policy-makers throughout Europe.

About Idiopathic Pulmonary Fibrosis

Idiopathic Pulmonary Fibrosis (IPF) is a progressive, irreversible chronic disease of the lungs. In persons with this disease, the lung tissue, which is normally thin and pliable, becomes thick and scarred over time - this is called fibrosis. The disease is associated with a progressive decline in lung function as the scar tissue prevents oxygen from properly moving into the bloodstream. As a result, the brain and other organs do not receive enough oxygen, which leads to initial symptoms such as shortness of breath and chronic cough and can lead to respiratory failure and death.8 There is no known cause for this fibrosis, meaning that it is categorised as ‘idiopathic’. There are currently between 80,000 and 111,000 people living with IPF in Europe and approximately 30,000-35,000 new patients will be diagnosed with IPF in the EU each year,,,,. Presently, there are two EMA-approved treatments for IPF in Europe; however, IPF has no cure so far. Difficulty in diagnosis and rapid deterioration in some patients means that many people live only about 2 to 5 years after diagnosis.

The EU-IPFF is supported by Boehringer Ingelheim and Roche through a sponsorship or an unrestricted grant respectively.


Media Contact

For media inquiries please contact:

Liam Galvin, Secretary of the European Idiopathic Pulmonary Fibrosis Association (EU-IPFF)

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written declaration 26/2016 on idiopathic pulmonary fibrosis

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.

Read more: written declaration 26/2016 on idiopathic pulmonary fibrosis

Italian Parliament Project Report

Dear all,

we would like to draw your attention to the final report of the Italian Event organised by "AMA fuori dal buio" in Rome on March 1st, 2016.

As you probably remember, the event was designed to present the European IPF Patient Charter in the Italian national parliament. It was aimed at initiating a dialogue with policy-makers on how to address existing gaps faced by IPF patients to access optimal care, with a focus on specific regional challenges. By bringing together policy-makers and relevant stakeholders active in the health policy and medical field, we wanted to urge Ministries of Health and Research and/or Regional Governments to address the barriers to IPF care at a national level.

As you will read in this Report, we were really satisfied with the results of this project, and we'd like to share them with you. Our hope is that the Italian experience will be useful for organising similar events in the future in other countries as well.

Read more: Italian Parliament Project Report

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.

Read more: The Italian Parliament voted the motion that recognises Idiopathic Pulmonary Fibrosis (IPF) as...

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 from 9 EU Member States.

Read more: Written Declaration 26 on IPF is adopted!

European Idiopathic Pulmonary Fibrosis & Related Disorders Federation (EU-IPFF)

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 idiopathic pulmonary fibrosis (IPF) through one unified voice. IPF is a progressive, irreversible chronic disease of the lungs,1 with currently no known cure. EU-IPFF will push forward the IPF agenda at European level by improving patient access to treatment, increasing disease awareness, and advocating for research into new treatment options.

Read more: European Idiopathic Pulmonary Fibrosis & Related Disorders Federation (EU-IPFF)

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 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).

Read more: Status of the Written Declaration on IPF