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Patient organisation round-up: June 2020

Last Update 06/04/2021

Patient organisations have been connecting online more than ever during the COVID-19 pandemic. They have shared patient stories with each other and worked with healthcare experts to prepare information on the impact of specific lung conditions on COVID-19. Some organisations have found new ways to carry out fundraising activities to continue to raise the funds needed for their services to help people affected by lung disease.

Image: World PH Day ‘blue lips’ photo collage.

PHA Europe celebrates World PH Day

This year for World PH (pulmonary hypertension) Day, 26 member associations of PHA Europe around the world raised the awareness of PH. They originally planned to hold big sporting events and public gatherings, but due to COVID-19, these were cancelled. In response to the situation, the initiative went online: 

  • Members made hundreds of photos using the popular blue lips effects (CURE PH) and posted on their social media channels.
  • They made a video called O2Kids with subtitles in 20+ language subtitles.
  • They organized a webinar on access to treatment.
  • They organized a photo contest: the judging panel consisted of five international photographers and a public vote on Facebook.

PHA Europe, with the support of ERN-LUNG, also launched a COVID-19 survey, available in 19 languages with more to come. 

If you are a PH patient or carer, please fill out the survey.

PAHSSc meets with experts and connects with more patients across Turkey

The Pulmonary Hypertension and Scleroderma Patient Association (PAHSSc) of Turkey has been attending several online meetings, webinars and conferences over the last few months. Cardiologists and pulmonologists specializing in pulmonary arterial hypertension (PAH) carried out online presentations on PAH and COVID-19, from which PAHSSc members learnt a lot and had their questions answered.

As a patient association, they organised Instagram videos featuring experienced PAH patients, and they will follow it with a series for scleroderma patients. During quarantine, PAHSSc has managed to reach more patients from all around Turkey through their online activities, bringing more people together to connect virtually and share experiences.

Alpha1 Deutschland launches COVID-19 survey for Alpha-1 patients

Alpha1 Germany, together with their advisory board member Prof. S. Janciauskiene, are trying to find out more about the impact of Alpha-1 Antitrypsin Deficiency on COVID-19 symptoms and progression. To do this they have launched a survey for patients to complete, which is available in German and English.

Complete the survey.

NTM Info & Research launches new website on bronchiectasis

Due to the close link between nontuberculous mycobacterial (NTM) lung disease and bronchiectasis, NTM Info & Research has launched a companion website for bronchiectasis. It provides information to help people affected by bronchiectasis to understand more about the condition.

Visit the website (bronchiectasisinfo.org) and follow them on Facebook, Twitter and Instagram.

Fundación Respiralia organises virtual fundraising activities

This year the Respiralia Foundation cannot go ahead with their annual event: the Swimming Tour around Formentera against Cystic Fibrosis. However, they are still working to raise the funds they need to pay for the services that they offer to children with cystic fibrosis.

They are doing this through three new initiatives:

The Respiralia Foundation has also received funding from Illes Marketing company to improve infection prevention with a new Ozone device. Find out more

Aspergillosis Trust carries out fundraising activities and shares patient stories

Despite the COVID-19 pandemic, the Aspergillosis Trust (AT) has managed to carry on with fundraising activities. Members have been doing challenges at home such as walking marathons to raise money for the organisation.

AT has also been gathering patient stories to share experiences of living with a lung condition during the COVID-19 pandemic on their website (aspergillosistrust.org/patient-stories/). The co-founder of AT, Sandra Hicks, shared her story to feature on the ELF website too. Read Sandra’s story.

AT has a page of COVID-19 information and resources, including how to look after oneself during the pandemic, on their website (aspergillosistrust.org/covid-19/).

ALERMA shares information about keeping well during COVID-19 pandemic

For this year’s World Asthma Day, held on 5 May 2020, ALERMA (Association of Allergies and Respiratory Diseases of Málaga) could not carry out their usual activities due to the COVID-19 pandemic. Instead, they sent information to their members about the importance of respiratory physiotherapy and to continue with usual treatments. Members also participated in a campaign called In Asthma the Zero Account, of the AstraZeneca Foundation.

They also conducted a radio interview to discuss asthma during the pandemic.

APEPOC gets ‘start-up’ training as a new patient organisation

The Spanish National COPD association (APEPOC) attended the International Consortium for Health Outcomes Measurement (ICHOM) online session in May, led by Prof. Michael Porter and the ICHOM Board in order to provide training for the patient association.  They learnt about ICHOM’s plan for the future, implementation case studies and the importance of benchmarking, designed to help them create their value-based healthcare (VBHC) strategy.

Asthma UK and British Lung Foundation partnership

The Asthma UK and British Lung Foundation partnership produced a Post-COVID HUB for:

  • People with post-COVID breathing difficulties and their family members and carers to get reliable information and dedicated support for physical and mental health.
  • Researchers to get information on emerging evidence, research efforts and funding opportunities related to post-COVID respiratory complications.
  • Healthcare professionals to get the latest guidelines on supporting people with post-COVID breathlessness.
  • Policy-makers and commissioners to get the latest information about the long-term respiratory impacts of COVID-19, to inform meaningful policy and service change.

Breathe Easy Westminster

The Asthma UK and British Lung Foundation partnership’s support group Breathe Easy Westminster has been working on sending emails and text messages and phoning their members. The emails are grouped under three information headings:

  • fun and free on-line shows;
  • on-line study, exercise, etc.; and
  • advanced clinical COVID-19 information.  

Texts focus on non-digital helpline information and birthday greetings.  As well as to the members, this information is also circulated to over 500 local support contacts in Westminster. 

 

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