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Patient organisation round-up, February 2015

Last Update 06/04/2021

This month, patient organisations across Europe have been organising and participating in a range of activities to raise awareness of the importance of lung health.


This month, patient organisations across Europe have been organising and participating in a range of activities to raise awareness of the importance of lung health.

Lovexair signs agreement with health education foundation in Spain

Improving the health and quality of life of people with lung conditions depends on the education and information they receive about their condition. This is the starting point of the collaboration agreement signed between Lovexair Foundation and Fundadeps (Education for Health Foundation, from San Carlos Clinic Hospital in Madrid), one of the largest national organisations specialising in health education in Spain.

The agreement will allow the development of educational programmes, activities and campaigns to raise awareness among people with lung conditions and their carers,  on the best ways to live a healthy life. The collaboration will promote activities related to lung health awareness, the prevention of lung disease, and self-management and care support for people with chronic lung disease. 

For more information read the article or go to the website.

Getting breathless for pulmonary hypertension in Valencia, Spain

On 1 February, 2015, the Spanish National Pulmonary Hypertension Association organised a 5km and a 10km run in Almussafes (Valencia) with the motto “Get Breathless for Pulmonary Hypertension (PH)”. 1,000 runners participated, which is a staggering number for a sports event exclusively dedicated to a rare lung condition. María Rodríguez, the Vice-president of the Association, who has PH herself, completed the 5k. The “Get Breathless for PH” campaign is promoted by PHA Europe and links sports with PH in Europeand Latin America.

Watch a video of the races

For more information go to the website.

Free pulmonary rehabilitation brings great results in Spain

ALERMA, a member of the Spanish patient organisation network FENAER, is organising free pulmonary physiotherapy sessions for its members twice a month. After several sessions, people with lung conditions have achieved very positive results, and can now perform daily tasks, such as walking and climbing stairs more easily.

FENAER has also welcomed the “On your own step by step” campaign of the Spanish Society of Pneumology and Thoracic Surgery, which promotes physical activity among people with chronic lung diseases.

For more information go to the website.

Pulmonary Fibrosis Trust UK assisting hospital doctors

The Pulmonary Fibrosis Trust UK is assisting doctors from Harefield and Royal Brompton hospitals with a research project to determine whether there is anything we can do to improve pulmonary rehabilitation for patients with idiopathic pulmonary fibrosis. Hopefully the  results from this work will help all patients with any form of interstitial lung disease.

The Pulmonary Fibrosis Trust, a charity founded by patients and carers for patients and carers, is also hoping to launch a new website which will provide information on what patients and carers think about pulmonary fibrosis. The new website will help new patients and carers to be better prepared for the challenges of living with pulmonary fibrosis.

For more information go to the website.

 
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