EVENT: A FORWARD-LOOKING AGENDA FOR RARE DISEASES – 20 NOVEMBER 2018, EUROPEAN PARLIAMENT

The European Idiopathic Pulmonary Fibrosis and Related Diseased Federation (EU-IPFF) and the Group of Socialists & Democrats in the European Parliament are please to invite you to their event “A forward-looking agenda for rare diseases: bringing Europe closer to its people”.

Where: Room ASP 3H1, European Parliament, Brussels

When: 11:00-13:00, Tuesday 20 November

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 With the mandate of the European Parliament and European Commission drawing to a close, the event will bring together stakeholders from across the health sector, as well as EU policymakers, to discuss what has been achieved on the topic of rare diseases in the past four years and what remains to be done and how to ensure improving the lives of patients with rare diseases remain a political priority for the new legislature. 

·         Annika Nowak, Member of the Cabinet of Commissioner for Health and Food Safety, Vytenis Andriukaitis, will speak about how the Commission can ensure that rare diseases remain a priority.

·         MEP Elena Gentile (Italy, S&D) will discuss the role of the European Parliament in keeping rare diseases at the top of the policy agenda.

·         Franz Schaefer, Chair of the ERNs Coordinators Group will talk about how to scale-up successful initiatives within the European Reference Networks. 

To highlight the importance of patient involvement and person-centric care, this event will also mark the launch of the EU-IPFF Benchmarking Report and Position Paper on the Journey of Patients living with Idiopathic Pulmonary Fibrosis and other forms of Pulmonary Fibrosis.

The full agenda is available here.


This event is kindly hosted by MEP Elena Gentile with the support of the European Idiopathic Pulmonary Fibrosis Federation – EU-IPFF.

To register please fill in the form here or contact EU-IPFF Secretariat at secretariat@eu-ipff.org

Places are limited and registrations are on a first-come first-served basis.

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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