News

Patient organisation round up: April 2020

Last Update 06/04/2021

Patient organisations from across the globe have been involved in various activities to tackle the issues faced by people with lung conditions and help improve outcomes.


In the last month, patient organisations from across the globe have been involved in various activities to tackle the issues faced by people with lung conditions and help improve outcomes.

In light of the coronavirus outbreak, patient organisations have also been producing information and resources for respiratory patients. Please see the list at the bottom of this page for disease specific information in different languages.

Image: Jacob Eagan Bright, President of the Philippines Asthma & Lungs Allergy Association with young patients of asthma.

Philippines Asthma & Lungs Allergy Association tackles childhood asthma attacks

After complaints about the growing number of children in clustered slums having asthma attacks, the Philippines Asthma & Lungs Allergy Association (PALAA) have begun a community investigation in three towns in the Philippines. The aim of the investigation is to find out:

  • the number of asthma attacks and their triggers;
  • the types of asthma (environmental or hereditary);
  • the method of caregiving to the asthmatic children; and
  • where their nearest hospital for medical assistance is.

These communities were also educated by PALAA community educators on how to diagnose asthma in young children, how to manage it and how to respond when it is severe.

Pulmonary Fibrosis Trust get interviewed on BBC Radio

Members of the Pulmonary Fibrosis Trust, Nick Ashill and Peter Bryce, were interviewed on BBC (British Broadcasting Corporation) Three Counties Radio. They informed listeners of what pulmonary fibrosis (PF) is, and then talked about Nick’s experience of running across the USA to raise awareness of PF. In 2017, Nick started in California on his epic run to reach New York by foot. Having completed 4,000 kilometres, he was hit by a pick-up truck. Nick suffered severe injuries and spent several months in hospital. Now, 3 years later, he is planning to finish his run with just under 1,000 km remaining. The surgeons who saved his life will start the run with him, together with the Ohio State Police. Nick is a truly amazing man, who is undergoing this incredible venture to raise awareness of PF both in the UK and USA.

Read more on Nick’s web page nickrunsamerica.com and listen to the interview, which is about 15 minutes into the show.

Fundación Contra la Hipertension Pulmonar meet with Health Minister of Madrid

Representatives of the Foundation Against Pulmonary Hypertension (FCHP) and experts in the field of pulmonary hypertension (PH) held a meeting with the Minister of Health of the Community of Madrid, Enrique Ruiz Escudero. The meeting aimed to address issues related to PH, such as diagnosis, quality of treatment, research and psycho-social needs of those affected. FCHP presented the projects that they are involved in and their priorities to continue improving care for people affected by PH. The Minister expressed his desire to strengthen the collaboration with FCHP to improve resources for PH.

Aspergillosis Trust holds fundraising and awareness raising activities

The Aspergillosis Trust (AT) held their usual round of fundraising. This year’s activities included a raffle with some prizes and a sale of awareness items. These activities, along with personal donations, raised £675 for AT. Members and supporters also held Coffee and Cake mornings to raise awareness and funds for The Fungal Infection Trust (FIT), which contributed to a grand total of £1,684.50 raised for FIT.

The awareness poster that AT created for World Aspergillosis Day went very well, being shown on screens at Kings Cross tube station in London. See the poster.

An AT Member also did a piece for the local news in East Kent telling his story ofdefying the odds after a rare disease diagnosis. Read Stewart’s story.

Alpha1 Deutschland creates flyer for COPD patients to improve Alpha-1 diagnosis

Alpha-1 Germany has created a flyer, which aims to raise awareness of Alpha-1 Antitrypsin Deficiency among people with COPD. Despite clear recommendations from guidelines and professional societies to test every COPD patient for Alpha-1, most patients are still undiagnosed. Although the disease was discovered 50 years ago and specific therapies exist, the genetic disease that has similar symptoms to COPD is often forgotten.

View and download the flyer.

A national COPD association has been created in Spain, called APEPOC

A new national COPD patient organisation has been created in Spain, called Asociación de Pacientes con EPOC (Association of patients with COPD) (APEPOC). Their mission is to be the voice of COPD patients and their families in Spain and to increase the visibility of the disease and its burden. APEPOC also deals with the topic of air pollution, because indoor and outdoor air pollution both have strong links to COPD.

ELF warmly welcomes APEPOC to the ELF patient organisation network.

Visit their website: www.apepoc.es

Alfa-1 España postpones meeting due to COVID-19

Due to the COVID-19 pandemic, the Alpha-1 Spanish Association has postponed their meeting of patients with Alpha-1 Antitrypsin Deficiency that was planned for April 24-26 in Teruel. Depending how the pandemic progresses, they will inform about the new dates for the meeting.

https://diaeuropeo2020.alfa1.org.es/

PCD Support hold awareness raising events in Manchester and Leicester, UK

Royal Manchester Children’s Hospital and one of their families in Leicester have been raising awareness of primary ciliary dyskinesia (PCD). PCD is a difficult condition to diagnose but there is evidence to show that the earlier the diagnosis the better the outcome. 

Find out more.

AEACaP attends digital health training session

The Spanish association of people affected by lung cancer (AEACaP) attended a training session held by the European Patients Academy (EUPATI) about technologies and their increasing importance in European health systems.

Helping Hands Foundation supports children through Community Base Rehabilitation programme

The Helping Hands Foundation in Pakistan were involved in the organisation of a Community Base Rehabilitation (CBR) programme. The programme aimed to reach out to a large number of intellectually and physically impaired children in different localities of Multan. With the help of trained community resource specialists, it involved providing specialised services and individual family service plans for children and their families on a home-based level.

PAHSSc organises ‘patient school’ and carried out activities for Rare Disease Day

The Turkish Pulmonary Hypertension and Scleroderma Patient Association (PAHSSc) held a ‘patient school’ which focused on pulmonary arterial hypertention (PAH), scleredorma and idiopathic pulmonary fibrosis. Leading experts gave talks, followed by a Q&A. PAHSSc gave a personal oxygen conentrator to their youngest patient aged 3 years, Cagatay, so that he could go out with his family and still get his oxygen.

PAHSSc also participated in activities for Rare Disease Day.

  • They were represented at Acibadem University on the topic of PAH and their rights at work.
  • They participated in International Biotechnology Congress.
  • They visited the parliament with other rare disease associations to voice concerns and get to meet with the newly formed Rare Disease Unit.
  • They participated in a 1-day symposium in Adana organised by the National Vascular and Endovascular Surgery Association on the topic of ‘Grey Areas in PAH’.

GAAPP is hiring an Executive Director

The Global Asthma and Allergy Patient Platform (GAAPP) is hiring an Executive Director. They are looking for an Executive Director (ED) who is a dynamic, flexible and creative leader who will drive fundraising, relationship building and overall community presence. The ED may be based in any geographic region given the global scale of work and virtual office setting.

Read the Executive Director Job Description. To apply, please send your CV/resume and cover letter to Tonya Winders, GAAPP President at twinders@AllergyAsthmaNetwork.org.

 

COVID-19 materials produced by patient organisations

Fundación Lovexair, España
https://lovexair.com/covid-19-informacion-a-con-ciencia/
https://happyair.org/enfermedades-respiratorias-y-coronavirus/

Alfa-1 España
https://alfa1.org.es/que-podemos-hacer-ante-el-covid-19/

CF Europe
https://www.cf-europe.eu/information/

Pulmonale Hypertensie / Dutch Pulmonary Hypertension Association
https://stichtingpulmonalehypertensie.nl/antwoorden-op-vragen-over-corona-virus/

Pulmonary fibrosis Trust, UK
https://pulmonaryfibrosistrust.org/covid-19-information-2020/

Czech Pneumological and Phthisiological Society
http://www.pneumologie.cz/

European Federation of Allergy and Airways Diseases Patients’ Associations 
https://www.efanet.org/care/covid-19 

Astma och Allergi Förbundet / Asthma and Allergy Association, Sweden
https://astmaoallergiforbundet.se/nyheter/fragor-och-svar-om-nya-coronaviruset/  

Women Against Lung Cancer in Europe
www.womenagainstlungcancer.eu/emergenza-covid-19/#more

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