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European Pulmonary Fibrosis Federation

EU-PFF

-Promoting access to accurate and unbiased information on PF care - Advocating for the rights of PF patients and carers and involvement of patients in key healthcare decisions - Improving access to treatment and services, including non-pharmacological treatment and medication across European countries - Facilitating information exchange and collaboration between European and international PF patient associations - Fostering collaboration with scientific experts and medical societies - Supporting the establishment of patient associations in countries where there is no representation EU-PFF defends the rights of patients across Europe* by advocating for an immediate and sustainable improvement of the quality of life and survival time of those with progressive Pulmonary Fibrosis (PF) whilst also promoting awareness of Interstitial Lung Diseases (ILDs) generally and defending the interests of PF patients from across the continent at a pan-European level

Lobbying Activity

Response to EU’s next long-term budget (MFF) – EU funding for competitiveness

12 Nov 2025

European Pulmonary Fibrosis Federation (EU-PFF) welcomes the opportunity to contribute to the discussion on the EUs next long-term budget and the proposed European Competitiveness Fund (ECF). This feedback aims to ensure that the unmet needs of people living with various forms of interstitial lung disease, including pulmonary fibrosis, which is a rare respiratory condition and in some cases with worse prognosis than various forms of cancer, are taken into account: 1. The next Multiannual Financial Framework (MFF) must contain a standalone health component with clear objectives, governance, and meaningful budget to make sure that public health and rare diseases, including pulmonary fibrosis, remain main areas of member states cooperation. 2. The European Competitiveness Fund (ECF) must explicitly include and fund European Reference Networks (ERNs) and rare disease actions, including pulmonary fibrosis, to strengthen health systems and guarantee access to expert care. Integration of ERNs into national systems are of utmost important to ensure benefits for all citizens. 3. European Action Plan for rare diseases needs to be established with special attention to uphold EU solidarity, ensure access to care and boost competitiveness with special focus on biotechnology and advanced health technologies. 4. In order to ensure that patient and public involvement remains the main pillar of various aspects of healthcare (eg. participation in clinical research, market authorization, health technology assessment (HTA) ) long term, easily accessible and reliable resources of funds need to be made available for non-profit organization, including patient organizations, to make their operation sustainable and ensure that they are capable to contribute in a professional way.
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Response to Health technology assessment – Procedural rules for the assessment and management of conflicts of interest in joint wo

26 Jun 2024

The European Pulmonary Fibrosis Federation (EU-PFF) is an International Not for Profit organisation registered in Belgium and listed on the Europa Transparency Register. It is a membership organisation currently represented by its national patient groups in 17 European countries and with links & networks of patients and clinicians in many more both European and Internationally. The organization's mission is to act on behalf of the European pulmonary fibrosis community and provide a voice for this chronically ill, under-recognized and isolated patient cohort. Pulmonary Fibrosis is a group of rare diseases that fall under the 200 + diseases clinically categorized as Interstitial Lung Diseases (ILD). This group of diseases is represented in the ILD Core Network of the European Reference Network of Rare Respiratory Diseases (ERN-Lung). Pulmonary Fibrosis currently has no cure and whilst two approved treatments may slow progression it has higher mortality rates than all but two of the common cancers with a average 3 to 5 years of survival post diagnosis still the accepted prognosis. On behalf of our membership we would comment on this consultation specifically on the area of conflict of interest as we feel that as active members of the Rare Disease patient groupings that this draft would result in a very difficult situation for the entire Rare disease advocacy area which would include those such as ourselves advocating for rare respiratory diseases such as pulmonary fibrosis. Umbrella associations like the EU-PFF and our many partnering organisations such as those represented in the other core networks of the ERN-Lung such as Pulmonary Hypertension, Alpha-One etc receive the mandate from their members to represent them in cross-border issues, policy engagements and EU-level discussions. The EU-PFF and other umbrella associations mainly have up to 3-5 persons who are engaged with pharmaceutical companies via participation in various committees, steering bodies, early research perspectives and presentations on patient preferences etc. These persons would also engage with scientific societies via task forces, guideline committees, clinical research collaborations as well as other engagements such as with the European Medicines Agency, national health care systems as well as political figures and other stakeholders. Those who are involved in such discussions are considered patient experts and well-positioned to be relied upon as trusted advisors. Should the Regulation be implemented, these experts would be excluded under Article 7(3) if no account was taken of the issue of the capacity & numbers available to the rare disease groups. This would leave a huge gap and the main objective of patient involvement within the package would be missed. National patient associations often lack the capacity to nominate persons to EU level matters and in many cases language is another hurdle. And whilst patient experts may receive funds directly & indirectly from industry this is the reality of rare disease groups. It cannot be expected that every advocate or group can finance their own costs, spending days away from careers or home to represent the interests of patients. Rare disease solutions and valued outcomes needs a multi-stakeholder approach and this behests patient experts to engage with all stakeholders including industry so as to provide patient involvement - they are the experts on their disease and their numbers are few. This existing model should not be considered as a conflict of interest by default if it can be accepted e.g. by diversity of funding, transparency that the patient experts are not biased. Clearance should be ensured on individual and general level specifically for Rare Disease whose only hope for cures & progress is a multi-stakeholder, inclusive approach model. We therefore propose a exclusion for those experts from Rare Disease cohorts possibly linked to robust participation in the EU Transparency Register.
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Response to Evaluation and revision of the general pharmaceutical legislation

27 Apr 2021

The European Idiopathic Pulmonary Fibrosis & Related Disorders Federation (EU-IPFF) welcomes this opportunity provided by the European Commission to provide feedback on the revision of the EU general pharmaceuticals legislation. We are a Belgium registered International not-for-profit organisation that was established in 2016 and represents as a federation a collective of national not-for-profit patient organisations from fifteen European countries. The aims of the European Idiopathic Pulmonary Fibrosis & Related Disorders Federation (EU-IPFF) and those of its membership are focused on the supporting of patients and families affected by Pulmonary Fibrosis. Pulmonary Fibrosis is an umbrella term used for a subset of diseases that form part of the overall disease area of Interstitial Lung Disease which in turn is made up of approximately two hundred separate diseases. The diseases we advocate on behalf of those affected by them are classified as Rare Respiratory Diseases and as such the EU-IPFF are active members of both the European Reference Network on Rare Respiratory Diseases (ERN-Lung) and Eurordis – the European Organisation for Rare Disease’s and have either contributed or will be contributing to their submissions during this consultation process. We, however, take this welcome opportunity to highlight one specific issue that we feel deeply affects the standing and effectiveness of Patient Advocacy and Patient Involvement within the areas covered by this review. Advocacy and Patient Involvement have been recognized by the European Commission, its’ agencies, and programmes as desirable across all disease areas and areas of operation. To this end, for example, we recognise that Patients and Patient Advocates have been incorporated into the workplans and structures of the European Medicines Agency and European Reference Networks to some degree. We therefore see this review as an opportunity for the Commission to recognize Patient Advocates as healthcare stakeholders and adjust the language of articles and guide national interpretation to reflect this recognition. At this stage we highlight one example around Article 86 - Information on medicinal products. This prohibits advertising of pre-scription only drugs, limited to those qualified to prescribe and supply medicinal products. A common unforeseen consequence of this Article is confusion in the interpretation that sees bone fide Patient Advocates, non-prescribers such as nurse and allied health professionals technically unable to access educational events that would in the case of non-prescribing health care professionals greatly improve their knowledge and in the case of Patient Advocates allow capacity building via informed education and dissemination of health education to their patient communities. With health literacy in the European Union underperforming, it is important that Patient Advocates can access such events so they can provide a facilitation between health literacy and patients. We therefore call upon the reviewers to take account of the body of evidence and movement around the benefits from many perspectives of patient involvement and ensure that barriers to patient partnership, education and capacity building are not mistakenly placed within the legislation and instead patient advocates are accepted as important partners to European Union programmes, the Pharmaceutical Industry and Research groupings. The EU-IPFF fully supports the protection of patients but notes the maturity of the advocacy sector and the contribution it can make as a recognized Healthcare Stakeholder. On behalf of the EU-IPFF, Liam Galvin, Chief Executive Officer
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