EU-IPFF Initiates a debate on Rare Diseases in the European Parliament’s Plenary Session

On the 13th of December 2018, during the last plenary session of the year, the European Parliament held a debate based on the oral question (OQ) on rare diseases addressed to the European Commission, was initiated by EU-IPFF.

EU-IPFF started its policy commitment in 2014 with the development of the first European IPF Patient Charter, and has since then encouraged the adoption of a   Written Declaration on IPF by the European Parliament in 2016, and published its  first EU-IPFF Benchmarking Report on Access to IPF care in Europe in November 2018. The development of the oral question and the success of having it included in the European Parliament’s plenary agenda represents a great milestone for the Federation and for patients with a rare disease, as it shows the commitment of the European institutions to take action in this field.

We are very proud to have led this process together with some members of the European Parliament, namely John Procter (ECR, UK), Estefanía Torres Martínez (GUE/NGL, ES), and Tilly Metz (Greens/EFA, LU), as well as patients and healthcare providers. Together we managed to move the oral question forward and have it included in the plenary agenda.  We are also very thankful to MEP Elena Gentile (S&D, IT) who has always supported the work of the Federation in order to promote better EU coordination for rare diseases and IPF.

The plenary discussion was hosted by the European Parliament in Strasbourg and was opened by one of the OQ rapporteurs Gesine Meissner (ALDE, DE), who presented the oral question to the Vytenis Andriukaitis, Commissioner for Health & Food Safety. She shared a heart-warming personal story of how her family was affected by a rare disease. She pointed out that there are between 6.000-8.000 rare diseases in Europe and they affect about 30 million people, which is a considerably large number. As Ms. Meissner notes: “Essentially, a rare disease means that when people get the diagnosis, there are a lot of question marks.” We at EU-IPFF are aware of the emotional state post diagnosis, and work at a national and European level to ensure that we can provide patients with information and a support network.

Ms. Meissner ended her personal story addressing the following questions to the European Commission and opening the floor for the debate. The questions included:

  • What measures has the Commission taken so far to ensure accurate and timely diagnosis of rare diseases, as well as access to affordable medicines required to treat them, across the EU? How does the Commission promote research in the field of rare diseases and into the development of new or improved methods for early diagnosis? How does it intend to further these efforts and achieve measurable improved outcomes for rare disease patients in all EU Member States?

  • How does the Commission intend to guarantee access to information and to medicines and medical treatment for rare disease patients throughout the EU? How does the Commission promote better coordination and learning across Member States, given that access to early and accurate diagnosis can have a significant impact on the patient's prognosis and quality of life?

  • What are the Commission's plans to ensure sustainable funding of patient organisations supporting the European Reference Networks on rare diseases, for example by means of the European Joint Programme on Rare Diseases?

A lively discussion took place during the session, including statements from:

  • Vytenis Andriukaitis, Commissioner for Health & Food Safety;

  • Sirpa Pietikäinen (EPP, FI);

  • Andrejs Mamikins (S&D, LV);  

  • Ivan Jakovčić  (ALDE, HR);

  • Paloma López Bermejo (GUE/NGL, ES);  

  • Ana Miranda (Greens/EFA, ES);

  • André Lissen (ENF, NL).

Commissioner Andriukaitis stated that, “In the past 20 years the Commission had been working on rare diseases, creating networks and encouraging innovative ways of working and research.” Rare diseases remain a priority for the European Commission and the work that has been done so far reflect this commitment. For example, the Commission supported the establishment of the European Reference Networks (ERNs), which are designed to facilitate access to timely diagnosis, linking experts throughout Europe. The EU-IPFF is for instance cooperating with ERN-LUNG (European Reference Network on Rare Pulmonary Diseases) in order to ensure that the patient voice is heard throughout the various ERN activities.  

MEP Pietikäinen (EPP, FI) pointed out that a lot could be done at a European level. She specifically mentioned the cross-border healthcare directive and the eHealth framework as instruments to increase timely diagnosis, which is of great importance, especially for IPF patients. Furthermore, MEP Mamikins (S&D, LV) pointed out that there is a European need to “…ensure that rare diseases are adequately coded, support national systems, improving recognition and visibility of rare diseases, and linking ERNs and identifying alternative treatment options.”

Commissioner Andriukaitis concluded the plenary session by stating “no single country has the knowledge or capacity to tackle these diseases on their own. Together, we can share best practice, coordinate research, pool data and act more effectively and decisively.” EU-IPFF is in full agreement and hopes to further accelerate positive change throughout 2019 and beyond.

We hope that by driving this process we have managed to launch a message to future European leaders to continue the conversation on how to improve the lives of patients living with rare diseases. We really believe that now is the time for European institutions to lead that conversation and involve all relevant parties, including patient organisations, in the identification of solutions to improve quality of life for rare disease patients across Europe. We are committed to continue working with all the relevant stakeholders to ensure that action on rare diseases remains a priority area at European and national level.


8th Advancing ILD Research (AIR) Educational Meeting

Klaus Geissler was invited to participate in the 8th edition of the Advancing ILD Research (AIR) Educational Meeting to provide his viewpoint as a patient. The event was held on 17 November in Munich.

Mr Geissler co-led, together with Dr. Francesco Bonella, Chair of the EU-IPFF Scientific Advisory Board, two roundtable discussions on the topics of patient involvement in research and identification of research needs in interstitial lung diseases (ILDs). To lit the debate on patient-centricity, panelists were asked to address critical questions such as: How have your patients helped guide your thoughts on research needs ?  Have you already involved patients in your research ? Would you consider formalizing the further involvement of patients in research ? How do you feel it would beneficial to include patients? What would be the challenges of including patients?

The questions triggered very interesting discussions. Agreement was reached on the concept that greater involvement of patients would improve recruitment of patients participating in clinical trials. This could also help identify new outcomes, implement inclusion criteria, consider different subgroup of patients who are generally excluded from clinical trials, such as those with advanced disease. An important learning from the debate is that more discussion is needed around the ethical implications of patient involvement in steering committees for the design of new clinical trials given the very stringent rules that exist to regulate interactions between companies and patients.  “As a patient, I firmly believe that more patient involvement in research will be beneficial. Patient organisations and their leaders have the best knowledge on how to live/survive with this disease and know how to assess acceptable risks versus potential benefits of clinical trials for the development of new therapies” – commented Mr. Geissler in his concluding remarks.

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EU-IPFF and European Parliament Celebrate Achievements on Rare Disease Policies

The EU-IPFF and MEP Elena Gentile (S&D, IT) hosted an event to discuss the health-related achievements of the current legislative term and to look ahead to future political agendas.

Brussels – 20 November 2018. The Group of Socialists & Democrats and the European Idiopathic Pulmonary Fibrosis Federation (EU-IPFF) hosted an event at the European Parliament on November 20, 2018. The event titled, “A forward-looking agenda for rare diseases: bringing Europe closer to its people”, reviewed what has been achieved on the topic of rare diseases in the past four years and what remains to be done.

Against the backdrop of the current mandate of the European Parliament and European Commission drawing to a close, the event brought together stakeholders from across the health sector, as well as EU policymakers – notably MEP Elena Gentile (S&D Group, IT) who discussed the role of the European Parliament in keeping rare diseases at the top of the policy agenda. Annika Nowak, Member of the Cabinet of Commissioner for Health and Food Safety, Vytenis Andriukaitis, spoke about how the Commission will continue to ensure that rare diseases remain a political priority for the new legislature. In addition, Franz Schaefer, Chair of the ERNs Coordinators Group discussed how to scale-up successful initiatives within the European Reference Networks. 

Attendees at the event celebrated the achievements of the past few years, made possible by joining forces at a European level. These include the establishment of the European Reference Networks (ERNs) connecting highly-specialized European healthcare professionals working on rare diseases.

However, it was also acknowledged that gaps remain within and across EU countries when it comes to delivering care and treatment for complex, chronic conditions such as Idiopathic Pulmonary Fibrosis (IPF). These have been identified within a new Benchmarking Report which was presented by the EU-IPFF during yesterday’s event, and is available at this link.

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The Report outlines the current state of IPF care and management in Europe, identifying best-performing countries along with challenges that demand greater political attention and an immediate response. It showed an alarming variation in access to specialised care across countries and it called for the implementation of existing guidelines to help standardise processes and address health inequalities.  The Report also showed that greater awareness of IPF signs and symptoms among general practitioners is needed to address delays in diagnosis, to increase referral to specialist care and to improve timely access to treatment, which can slow disease progression.  It also highlights that too many barriers exist in access to non-pharmacological treatment including lung transplantation, supplemental oxygen, pulmonary rehabilitation, and palliative care.

Speaking about the importance of EU support for rare disease patients, EU-IPFF President, Carlos Lines Millán, said “The involvement of the European institutions fostered the hope of many patients, doctors and researchers. This institutional support has been translated into recommendations to member countries, into research aid and into better policies.”

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However he also noted the need for future leaders to continue with the work and ensure rare diseases remain a political priority, adding  “Current decision-makers can still have a word to say on rare diseases, and notably by securing sufficient funding for scientific research in order to abolish the “idiopathic” name from this disease”.  

While healthcare delivery remains a Member State competence, there is a role for the EU to play in sharing best practices and pooling resources, to benefit of all European IPF patients. The upcoming 2019-2024 European parliamentary term represents an opportunity for future EU leaders to promote radical policy change that can improve healthcare services and outcomes. 

A full report of the event is available at this link.

To receive more information on the EU-IPFF activities, and notably on the Benchmarking Report, do not hesitate to contact the EU-IPFF Secretariat at secretariat@eu-ipff.org.

*ENDS*

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

The European Idiopathic Pulmonary Fibrosis and Related Disorders Federation (EU-IPFF) brings together 17 European national patient associations from twelve European countries. Its mission is to serve as the trusted resource for the IPF community by raising awareness, providing disease education, advancing care, and funding research. EU-IPFF collaborates with physicians, medical organisations, people with IPF, caregivers and policy-makers throughout Europe. For further information, please visit www.eu-ipff.org.

About Idiopathic Pulmonary Fibrosis

IPF is a rare, long-term, progressive disease that affects the fragile tissue in the lungs. It leads to a gradual, persistent decline in lung function. IPF typically occurs in people over 45 years of age, and is more common in men than women. About 110,000 people in Europe live with IPF, and 35,000 new patients are diagnosed every year. The disease is irreversible and, without treatment, half of all patients will die within 2-5 years of diagnosis.

Fitness for breath 2018: a bike tour in the center of Italy and the first Italian meeting on IPF and other rare respiratory diseases

FIMARP, the Italian Federation of support groups for patients with IPF is organizing the first Italian meeting on IPF and other rare respiratory diseases in Pistoia from September 22-23. This meeting will be an important occasion to bring together doctors, patients and all the relevant stakeholders involved in rare pulmonary diseases. It will be followed by a triangle tournament of football between Italian Transplanted Team, Italian National Transplanted Team and an all stars Italian team and a concert (Music 4 Breath) in memory of the first FIMARP President Alessandro Giordani.

Other initiatives will take place in some Italian cities during IPF World Week 2018, including a spirometry day in Catania and in Padua.  

Additionally, as part of the Fitness 4 Breath initiative, a bike tour started on August 26: Achille Abbondanza, a 46 years old IPF patient will bike from Rome to Forli' (525km) in 1 week to raise awareness of IPF. Other IPF patients can also join his tour and he will stop in different cities to visit the local hospitals and the patients support groups.  

Additional information on this event is available on FIMARP website: www.fimarp.it 

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IPF World Week in Italy: Yoga and breathing exercises

During IPF World Week 2018, the Italian support group for patients with IPF AMA FUORI DAL BUIO will organize a yoga session focusing on breathing together with AnatomYoga® . The session will take place on September 23 from 10:00am to 1:00pm in Modena (Italy). 

Yoga is beneficial for IPF patients as it can stimulate the lungs through focused breathing. In fact, basic breathing exercises may improve lung function and ease breathing problems.

Additional information on this event is available on the following websites www.fuoridalbuio.it - www.ipfworld.org - www.anatomyoga.it and at the following email address: associazione.amafuoridalbuio@gmail.com

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IPF Week in Poland

The IPF Polish Society is organizing an event on September 22, 23, 2018. On Saturday, September 22 three lectures about IPF will be given by healthcare professionals specialised in IPF, who will be also meeting with patients with IPF. On Sunday, September 23 a picnic for doctors, nurses, patients and their families will be organized; this will also be an opportunity to have spirometries performed. One of the objectives of this event is to continue collecting money for portable oxygen concentrations. 

The programme of the event is available at this link and additional information is available on the website of the IPF PolishSociety http://ipf.org.pl/

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IPF World Week in Italy: Open Day with healthcare professionals and patients

During the IPF World Week 2018, the Italian support group for patients with IPF AMA FUORI DAL BUIO will organize an Open Day with healthcare professionals and IPF patients at the Center for Rare Pulmonary Diseases at the Modena's hospital (Largo del Pozzo, 71 from 10:00am to 1:00pm). The aim of this event is to provide patients and their carers with up to date information on the latest research developments in IPF. Additionally, the event is supposed to be not only a moment during which patients can share their own experiences and best practices with other patients living with IPF, but also an occasion for researchers and doctors to present the new developments in the field of diagnosis and IPF care. The event will see the participation of Dr. Luppi, the director of the Center for Rare Pulmonary Diseases, Dr. Cerri, researcher at the same Center and Dr Magnani, coordinator of the IPF support group, together with Rosalba Mele, president of AMA FUORI DAL BUIO.  In the framework of this event, it will also be possible to benefit from free spirometries from 10:30am to 12:30pm. 

Additional information on this event is available on the following websites www.fuoridalbuio.it - www.ipfworld.org and at the following email address: associazione.amafuoridalbuio@gmail.com

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Talk about it! 10 meetings in 10 hospitals.

The Dutch Pulmonary Fibrosis Society in cooperation with 10 hospitals is organising 10 meetings in 10 different hospitals in the Netherlands during the IPF World Week 2018. During these meetings, patients, carers and healthcare professionals will learn more about pulmonary fibrosis. Different topics will be covered, among which: diagnosis, treatment, oxygen therapy and the impact of the disease in patients' daily lives.  

The Dutch Pulmonary Fibrosis Society will also take this opportunity to present its activities and to launch its new campaign: 'You don't have pulmonary fibrosis by yourself, talk about it!'.  The aim of this campaign is to encourage patients living with pulmonary fibrosis to seek the support of their carers and to educate the carers on how to support their loved ones. 

Additional information is available at this link and at the following email address: l.naber@longfibrose.nl

 

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Shifting paradigms in the diagnosis and treatment of ILDs

Since the last meeting in 2016, there have been many exciting advances in the field of interstitial lung diseases (ILDs). The Ruhrlandklinik Essen hospital will present an extensive update on clinical and research developments in the field of idiopathic pulmonary fibrosis (IPF) and other ILDs. The 6th ILDs Colloquium will take place on 21 September 2018 at the Ruhrlandklinik (Essen, Germany), part of the University of Medicine of Essen. Francesco Bonella, chairman of the EU-IPFF Scientific Advisory Board is featured among the speakers. The full programme is available here

Additional information on this event is available at this link and at the following email address: info@cliniqo.de

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International Symposium: Diagnosis and therapies in diseases with telomere shortening: dyskeratosis congenita and pulmonary fibrosis

Madrid, 20-21 September 2018

The Madrid headquarters of the Ramón Areces Foundation will host the 'International symposium on diagnosis and therapies in diseases with telomere shortening: dyskeratosis congenita and pulmonary fibrosis’. This meeting of experts, coordinated by María Molina, member of the EU-IPFF Scientific Advisory Board, among other coordinators, will place special emphasis on two of these rare diseases, dyskeratosis congenita and pulmonary fibrosis.

In addition, Carlos Lines, President of the Spanish IPF Association (AFEFPI) and of the European IPF Federation (EU-IPFF),  will highlight the importance of the associative movement to fight against the impact of these pathologies from a Spanish and a European perspectives.

The full programme is available at this link

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