IPF Community Forges New International Commitment to Raise Awareness of Idiopathic Pulmonary Fibrosis | American Lung Association

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IPF Community Forges New International Commitment to Raise Awareness of Idiopathic Pulmonary Fibrosis

(September 21, 2017)

During the European Respiratory Society International Congress in Milan, Italy many of the world’s leading organizations concerned with idiopathic pulmonary fibrosis (IPF)* met to share strategies and resources to fight the disease and improve quality of life for patients and caregivers.

Causing irreversible scarring of the lungs, IPF interferes with a person’s ability to breathe and gets progressively worse over time – with most succumbing to the disease three to five years after diagnosis. Unique to each individual, IPF can develop quickly or stay stable for many years and has no known cause. More than 100,000 Americans, and 3 million people worldwide, are living with IPF.

IPF Community

The meeting was convened by Three Lakes Partners in collaboration with the European Idiopathic Pulmonary Fibrosis & Related Disorders Federation (EU-IPFF). "IPF is a devastating lung disease, yet it remains an unknown disease that receives very little attention," said Ken Bahk PhD, Managing Director, Three Lakes Partners. "Our mission is on behalf of patients and caregivers: to increase visibility of this disease and to attack IPF from all sides — diagnosis, treatment, and patient quality of life — all by engaging the most innovative, aggressive, and experienced partners in our collective fight."

Key outcomes of the international meeting included:

  • Ensuring international organizations fighting IPF are better connected and able to share ideas and resources. Three Lakes Partners has established a closed social network to facilitate ongoing dialogue, strategic planning, sharing of best practices and collaboration among leaders in the field.
  • Committing to collaborate on an international awareness-building effort designed to make IPF a well-known disease worthy of attention and resources from the worldwide community.
  • And famed opera singer and soprano Renee Fleming agreed to lend her powerful voice to the fight against IPF:

A final highlight of the events in Milan was a special webinar hosted by Three Lakes Partners to educate people worldwide about innovations and progress in the fight against IPF. The webinar was moderated by Elizabeth Estes, Chief Marketing Officer of Three Lakes Partners and featured speakers including: PF Warrior and IPF patient ambassador Bill Vick; Dr. Simon Walsh, Consultant Radiologist of Kings College Hospital Foundation Trust; Dr. Anne-Marie Russell, Clinical Research Fellow at the National Heart and Lung Institute, London; Heather Allen, CEO of Lung Foundation Australia; and Sally Draper, National VP at American Lung Association. You can learn about worldwide programs, innovations and progress in the fight against IPF from the 27th International Congress of the European Respiratory Society Congress in Milan, Italy through the recorded webinar.

*International patient advocacy and healthcare organizations represented at the Milan meeting included:

  • Three Lakes Partners
  • EU-IPFF
  • American Lung Association
  • Lung Foundation Australia
  • Irish Lung Fibrosis Association
  • Canadian Pulmonary Fibrosis Foundation
  • Asociación de Familiares y Enfermos de Fibrosis Pulmonar Idiopática
  • Association Pierre Enjalran Pour La Fibrose Pulmonaire Idiopathiique
  • Lungenfibrose e.V
  • Association for Supporting Patients with IPF in Poland
  • AMA Fuori Dal Buio
  • Pulmonary Fibrosis Foundation
  • Belgische Vereniging voor Longfibrose VZW
  • British Lung Foundation
  • Health Universitat de Barcelona Campus
  • Papworth Hospital
  • Imperial College London
  • Erasmus Medisch Centrum Rotterdam
  • patiemtMpower Ltd
  • European Lung Foundation (ELF)

 

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