Patient organisation round-up: July 2020

Patient organisations across Europe have been working to protect people with lung conditions during the COVID-19 pandemic by launching new campaigns and raising awareness of high-risk groups as restrictions are lifted in many countries.

Image: Badges of the ‘ShieldUS2020’ campaign created by a family with primary ciliary dyskinesia.

PCD Family Support Group appoints new Chair and PCD community appears on BBC News

After 17 years as Chair of the PCD (primary ciliary dyskinesia) Family Support Group, Fiona Copeland has handed over her position to Lucy Dixon. Lucy has PCD and is leading the charity into its next phase as it continues to raise awareness of PCD among the medical community and support those affected by the condition. Read about their AGM and latest news.

The COVID-19 pandemic has seen the PCD community come together to raise awareness of issues they are facing at this time. A mother of two children with PCD, Jennifer Faulkner featured on BBC Radio 4’s Woman’s Hour in June to speak about the issues facing children who are shielding and about their concerns around going back to school. Another family affected by PCD have set up a campaign called ShieldUs2020 that recently featured on BBC News and on the British Lung Foundation website. Ralph and his sister, who both have PCD, have been shielding for the past few months. Ralph and his mum Nina talked about the campaign, which allows people to buy badges and merchandise to indicate that they are shielding. It aims to help identify and protect people in high-risk groups as restrictions are lifted and those in the shielding groups start to resume activities in public. The money raised goes towards charity. ShieldUs2020 also raises awareness of the fact some people have ‘invisible’ conditions, encouraging people to respect social distancing so that everyone can feel safe and be safe.

The PCD Family Support Group are also keen to promote the PCD and COVID-19 study, which is a collaborative and international longitudinal study developed out of the University of Bern, alongside UK collaborators. This study is investigating COVID-19 infections in people with PCD. Find out more.

PAHSSc continues online activities

The Pulmonary Hypertension and Scleroderma Patient Association of Turkey (PAHSSc) has continued its online activities.

  • They have been sharing patient stories on Instagram.
  • Due to the COVID-19 pandemic, there has been a decrease in organ donation and an increase in the need for lung transplants, so they have been raising awareness of the importance of lung transplantation.
  • As the month of June was devoted to Scleroderma, they carried out online meetings for physical therapy and dermatology for scleroderma patients.
  • They have started a campaign called Abundance of Motion, which uses a phone app called Help Steps. The app counts a person’s steps each day, and the steps convert to funds which can be donated to a patient organisation or charity. This has become a little competition among PAHSSc members.

APEPOC shares COPD and COVID-19 data with EFE Salud

The Spanish national COPD patient association (APEPOC) shared some data on Spanish COPD patients and their concern about being one of the highest risk groups in the COVID-19 pandemic with the Spanish press headquarterEFE Salud. One quarter of those who died from COVID-19 in Spain had COPD.

Watch the full interview.

PHA Europe launches new website

The Pulmonary Hypertension Association (PHA) Europe has launched their new website. It not only has a fresh design, eye-catching features and well-structured landing page, but they have uploaded new materials, reviewed existing content and added new content they have been working on more recently. 

Visit the website:

Alpha-1 Germany holds webinar with Alpha-1 expert

Alpha-1 Deutschland held a webinar Alpha-1-Antitrpysine Deficiency: General, New and Rare with Dr. Timm Greulich (MD, PhD), Philipps University of Marburg, PneumoPraxis Marburg, scientific advisory board of Alpha1 Deutschland e.V. In his presentation, speaker Dr. Timm Greulich focused on the current scientific status of Alpha-1-Antitrypsin Deficiency. In four parts, he addresses the following questions:

  • What is Alpha-1-Antitrypsin Deficiency?
  • How dangerous is the disease?
  • How is the disease treated?
  • What is the latest news from research and science?

The full webinar is available to watch on their website and YouTube channel.

CF Europe collects data from cystic fibrosis patients in a survey

During the worst time of the COVID-19 pandemic in Europe, CF (cystic fibrosis) Europe, in collaboration with EURORDIS (rare diseases Europe) and the Rare Barometer Voices, collected world data from the CF community. More than 900 patients and carers across Europe filled in the survey, bringing to light the impact of the pandemic on patients’ follow-up appointments, treatment and perspectives.

French patient association for IPF organises teleconference with health professionals

 The Association pour la Fibrose Pulmonaire Idiopathique (APEFPI) president Jean-Michel Fourrier invited Professor Vincent Cottin (pneumologist), Stéphane Vaganerelli (psychologist) and Jesus Calabuig-Lopez (physiotherapist) to a one-hour live teleconference related to “IPF and COVID-19”. 200 people connected. The replay is still available to watch here:

Pulmonary Fibrosis Trust raises money and awareness through ‘minimes’

NHS Nursing Associate Su Hickman sadly lost her father-in-law Ray Hickman to Pulmonary Fibrosis in 2016. To honour his memory, and to raise vital funds and awareness of (idiopathic) pulmonary fibrosis, Su and her colleague Shelley make little ‘minimes’ (clay people) of healthcare professionals. Instead of payment, donations are being made to the Pulmonary Fibrosis Trust. They have grown so much in popularity that they recently featured on a local BBC news programme. They have gone from being a minime march to a minime parade as orders and popularity increase. The Pulmonary Fibrosis Trust is extremely grateful to Su and Shelley for their support which helps the organisation to continue providing vital support.

Spanish Association of People Affected by Lung Cancer holds webinars for lung cancer patients and family members

The Asociación Española de Afectados de Cáncer de Pulmón (AEACaP) joined four other cancer organisations in an initiative that seeks to improve the healthcare consequences caused by the COVID-19 pandemic. It aims to strengthen the support network for patients and raise awareness of the disease.

AEACaP also held a series of webinars to help lung cancer patients and their families live better with the disease. One webinar focused on dietary aspects and another focused on what we should know about the different treatments.  

Find out more.

Aspergillosis Trust connects with more patients and is involved with newly published article

Since shielding started for the majority of aspergillosis patients in March, the Aspergillosis Trust (AT) has been posting a light-hearted question on their Facebook group each day. The aim was that for a small part of the day everyone thought about something other than COVID-19. It proved to be very popular.

More patient stories have also been added to their website, where they share how they have been coping with shielding and how they have been looking after themselves during this time.

This month has seen the publication of the Campaign-Based Citizen Science for Environmental Mycology: the “Science Solstice” and “Summer Soil-stice” Projects to Assess Drug Resistance in Air and Soil-borne Aspergillus fumigatus by Jennifer Shelton, which AT is pleased to have taken part in.

Read the full article.

British Lung Foundation connects with Breathe Easy support groups virtually

The British Lung Foundation (BLF) held the first webinar for its 230 strong national Breathe Easy groups, of which 107 representatives attended. Kay Boycott, CEO thanked the groups for the voluntary work they do to support people with respiratory conditions and gave information about the merger with Asthma UK.  Dr Noel Baxter presented the latest information about COVID-19 and the groups were introduced to the new Digital Hub. Another link of interest is the for patients, researchers and clinicians.