Building a stronger voice for IPF

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)

Sign up the European IPF Charter!

For the first time, IPF patient advocacy groups came together to develop a European IPF Charter in support of more standardised care and equal access to diagnosis, treatment and after care options for those with IPF in Europe. The Charter has been endorsed my medical experts who are actively involved in IPF management and we are currently  approaching various stakeholders to secure additional endorsement.

The European IPF Charter calls upon European institutions and national governments to guarantee patients’ rights to early diagnosis, access to care including medication and lung transplantation, standardised management of IPF, high-quality information and improved access to palliative and end-of-life care. The Charter lays down concrete recommendations that, if adopted, would ensure improvements in IPF patients’ quality of life, whilst supporting efforts to develop better long-term treatments and ultimately find a cure.

Read more: Sign up the European IPF Charter!

There is something new in the air!

 Barcelona - Spain  | september 2013 | ERS Meeting 

Thanks to all the doctors and researchers who have given us "breath of hope" with these wonderful images!

"EVERY BREATH OF HOPE YOU TAKE"

Stay in touch posting photos of people making soap bubbles and sharing them with IPFWorld: This email address is being protected from spambots. You need JavaScript enabled to view it.

VISIT THE GALLERY WITH THE PHOTOS OF THE WEEK!

Read more: There is something new in the air!

IPF World Video

"BREATH OF HOPE" 

on-line the video
of the
IPF World Week!

 Share and spread the video of IPF World Week 2013. It was shot in Croatia during a meeting of the associations active in the field of suffering from idiopathic pulmonary fibrosis and in Italy, Modena. People who participated in the campaign are patients, family members, physicians, medical students, all convinced that sharing is the shortest way to get effective goals.

RARE DISEASE DAY

Ideas for supporting the campaign

Some easy ideas

  • Display posters, images or other awareness raising media such as ballons
  • Distribute stickers and flyers
  • Organise rare diseases events around topics paramount to patients
  • Organise a competitive event focused on rare diseases
  • Coordinate letter writing or email campaigns to local policy or national policy decision makers
  • Arrange to meet with local and national authorities

A bit more planning

  • Send a press release to the media
  • Award advocates of rare disease patient causes
  • Organise interviews with the media
  • Organise fund-raising events
  • Invite a VIP to endorse the Day
  • Implement a help line providing information about rare diseases
  • Organise a visit to a rare disease research lab by an Parliamentarian or Health Minister

    The sixth Rare Disease Day takes place on 28 February 2013. This year's slogan "Rare Disorders without Borders" emphasizes the need for international cooperation. Join an activity taking place near you to demonstrate global solidarity. Let's go beyond borders for rare disorders. Show your solidarity today!