Central & Eastern European ILDs Interstitial Lung Diseases  Patient Network

Central european ILDs Patient network


First Annual Meeting of the project CILDAPANET

Idiopathic Pulmonary Fibrosis Association held from 01-03 September, 2023 in Roslyn Central Park Hotel Sofia the First Annual Meeting of the project Central & Eastern European ILDs Patient Network – CILDAPANET (www.cildapanet.org).

Within two days, medical specialists from the country and abroad informed the Bulgarian and foreign participants – patients and their families, medical students from Medical University – Sofia, representatives of the pharmaceutical industry and other interested parties, about the diagnosis, treatment and follow-up of both interstitial lung diseases such as lung cancer; on doctor-patient communication and patients’ quality of life after diagnosis, and on holistic approaches to addressing the burden of disease.

Representatives from international and national organizations supporting and protecting the rights of patients with pulmonary fibrosis (European Pulmonary Fibrosis Federation – EU PFF, Polish Society for Supporting Patients with Pulmonary Fibrosis) and with rheumatic and musculoskeletal diseases (Platform of Organizations of People with Rheumatic and Musculoskeletal Diseases in Southern Europe – AGORA ) shared the experience and importance of these organizations in dealing with daily difficulties and challenges of a medical, domestic, social and institutional nature, which patients and their families face during the long journey of the disease.

This international forum initiated the holding of regular annual information meetings of patient organizations, members of the Central & Eastern European ILDs Patient Network – CILDAPANET, with medical and other specialists from the country and abroad, with the aim of uniting efforts in the fight for a better life, awareness and well-being of patients with interstitial lung diseases.

Rare Disease Day 2023

What is rare disease day?

Rare Disease Day is the official international awareness-raising campaign for rare diseases which takes place on the last day of February each year. The main objective of the campaign is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. Rare Disease Day was launched by EURORDISRare Diseases Europe and its Council of National Alliances in 2008.

There are over 300 million people worldwide living with a rare disease. Together across borders, and across the 6000+ rare diseases we work towards more equitable access to diagnosis, treatment, care and social opportunity.

300 million people living with a rare disease worldwide

  • Over 6000 different rare diseases
  • 72% of rare diseases are genetic
  • 70% of those genetic rare diseases start in childhood.

Video recordings of the #PFSUMMIT22 sessions

Sessions Thursday 3rd November 2022

EU-PFF Consultation guides