Patient Organisation Round-up: December 2020

Patient organisations have been very busy with exciting activities to celebrate various lung health awareness days and months, including World COPD Day, Pulmonary Hypertension Awareness Month and Alpha-1 Awareness Month. They have raised knowledge among the public and held patient-specific information and support sessions online.

LAM Academy Sweden holds annual meeting with Q&A about LAM and COVID-19

LAM Academy Sverige held their annual member meeting on 7 November on Zoom for 20 participants. Dr Maryam Fahti presented the latest news about LAM. The meeting included discussions about the impacts of COVID-19 on people living with LAM, and members of the organisation were able to ask questions related to these topics to Dr Fahti. The LAM Academy is planning another virtual Zoom meeting at the beginning of 2021.

Italian Bronchiectasis Association holds weekly webinars to help patients self-manage

Associazione Italiana Bronchiettasie (AIB) organised a series of weekly webinars for its members and bronchiectasis patients. Due to the COVID-19 pandemic, people with bronchiectasis have not been able to have the usual support from their healthcare providers. The webinars aimed to help patients get the medical support and psychological reassurance that they have been missing. During the webinars, experts in medicine, physiotherapy and psychology provided guidance to patients to help them self-manage their condition as much as possible.

Watch the webinars.

Results from SarcoidosisUK funded clinical trial now available

In 2018, SarcoidosisUK funded a major research project at the University of Hull into the use of the antibiotic azithromycin to treat pulmonary sarcoidosis, a disease which is fatal for some. The first results of the clinical trial showed a significant reduction in cough count and meaningful improvements in sarcoidosis-related quality of life after three months of azithromycin treatment. The £60,000 trial was carried out in 2019-2020 and funded by generous donations to SarcoidosisUK’s 20th Anniversary Campaign.

Access the results of the clinical trial.

Read the press release.

Respiralia Foundation receives large donations to support projects

Fundació Respiralia has been pleased to receive two generous donations.

  • The ‘Bankia – en acción’ programme has donated €3,000 so that the Cystic Fibrosis Association of the Balearic Islands and the Respiralia Foundation can keep helping to improve quality of life for people affected by cystic fibrosis (CF). Find out more.
  • The Mutual Médica Foundation awarded €4,500 to the Respiralia Foundation for the project “Education equals Health in Cystic Fibrosis”, which helps people with CF to understand and manage their condition independently. Find out more.

Aspergillosis Trust joins new ELF patient advisory group and sells fundraising calendars

Aspergillosis Trust (AT) has joined the new ELF Aspergillosis Patient Advisory Group (PAG).

AT has been selling their annual fundraising calendar for 2021, which has been very popular.

They have also been continuing to inform and entertain members in their Facebook group.

World COPD Day activities

FENAER COPD patients answer questions from celebrities

Federación Nacional de Asociaciones de Enfermedades Respiratorias (FENAER) celebrated World COPD Day (18 November) with a great online event, #VivirConEPOC (#LivingWithCOPD), on 17 November. During the event, several famous people asked COPD patients questions about their condition. These people included: politician Ángel Gabilondo; journalist Ricardo Reyes; actress Fátima Baeza; and pulmonologist Julio Ancochea. They shared a virtual stage with the patients Esther Gomara, Lucía García, and Iñaki Morán in the event moderated by the television journalist Luis Fraga.

Find out more and watch the event recording.

Czech Civic Association Against Lung Diseases raises awareness of COPD to the public

For World COPD Day, Český občanský spolek proti plicním nemocem (ČOPN) in association with the Czech Pneumological and Physiological Society, organised their annual activities to inform and raise awareness to the public about the burden, diagnosis, therapy and prognosis of COPD in the country and in the world. Due to the COVID-19 pandemic, all activities were done online this year. Activities included:

  • a press conference and statement on 10 November;
  • the development of a webpage with information about the main symptoms of COPD and advice on when it is recommended to see a doctor; and
  • a virtual conference “Day for lung health” with 10 sessions designed for both patients, the public and healthcare workers, which had 95 participants.

COPD Support Ireland holds patient conference and updates information pack

COPD Support Ireland held their Virtual Patient Conference on 21 November to mark World COPD Day. This year’s conference was titled ‘Living Well with COPD in a COVID World’ and covered a range of topics including:

  • Managing COPD during COVID-19;
  • Wintering Well during a Global Pandemic; and
  • Sleep, Mental Health, and Singing for Lung health. 

Dr. Desmond Murphy also spoke about ‘What the National Clinical Programme means for people with COPD’. Following a national media campaign, this conference was a great success reaching COPD patients from all around the country.

COPD Support Ireland has also updated their ‘Living Well with COPD during COVID’ information pack, which you can request by texting the word ‘COPD’ plus name and address to 51444. The pack includes:

  • the current ‘COPD & Me’ Booklet;
  • Top Tips for minding mental health from Professor Brendan Kelly;
  • Top Tips for minding physical health during COVID-19; and
  • a list of current resources.

Some of the organisation’s COPD Support Groups around the country are becoming more involved in meeting and exercising on Zoom. COPD Support Ireland has teamed up with Age Action Ireland who are offering volunteer tutors to support individuals within the support groups on using technical devices, to help them keep in touch with their loved ones safely.

You can also register to participate in the ‘SingStrong’ – singing for Lung Health’ programme on their website.

FFAAIR takes part in national debates to call for higher priority in COPD healthcare

Fédération Française des Associations & Amicales de maladies, insuffisants ou handicapés Respiratoires (FFAAIR) had a busy week around World COPD Day. They took part in national debates “Make COPD healthcare a priority”, and in the round table discussion “COPD and tobacco”. Find out more.

FFAAIR also took part in the “Tour de France of solidarity with COPD patients” organised by Solid’Air. Find out more.

They have also published videos of COPD patients talking about tobacco issues, which you can watch here.

GAAPP launches COPD Patient Charter and holds series of workshops with Lovexair Foundation

For World COPD Day, Global Allergy & Airways Patient Platform (GAAPP), in collaboration with AstraZeneca, launched the COPD Patient Charter, a document outlining six key principles of quality care that patients deserve to receive.

Download the Charter with accompanying materials.

Watch the introductory video.

Watch our webinar on COPD patients’ rights with panellists Dr. John Hurst, UK, Dr. Mohit Bhutani, Canada and Tonya Winders, USA.

In collaboration with Fundación Lovexair, GAAPP organised the 2nd LATAM Respiratory Patient Summit 2020 – a series of free sessions and workshops, open to the community. These meetings aimed to provide tools and new perspectives to improve training and management in respiratory health. Sessions were held in Spanish and for the first time, selected key sessions were held in Brazilian Portuguese.

Pulmonary Hypertension (PH) Awareness Month activities

PHA Europe supporters canoe along Croatian coastline for PH awareness

Pulmonary Hypertension Association Europe (PHA Europe) were very busy during November for PH Awareness month. One of the activities held over the course of the month was a breath-taking canoeing journey along the 650 kilometre coast of Croatia in the Adriatic sea. They docked on different islands every night, appeared live on RTL TV and in the local media who welcomed them and took statements about their adventure. The rowers had their lips painted blue as part of the ‘CURE PH’ campaign.

Watch the video of the journey and find out more about PH Awareness Month activities.

Pulmonary Hypertension and Scleroderma Patient Association holds online educational talks

To celebrate PH Awareness Month, Pulmoner Hipertansiyon ve Skleroderma Hasta Derneği (PAHSSc) had a series of online talks on PH, chronic thromboembolic PH, treating skin ulcers for patients with scleroderma, and organ donation, chaired by their president and attended by leading pulmonologists and cardiologists who specialise in PH.

This year there has been a shortage of the Influenza vaccine in Turkey. The vaccine is currently being given to healthcare workers and people who are over 65. Since PH patients are in the high-risk group, PAHSSc has been active in advocating for the the government to give priority to people with chronic conditions too.

Read more of PAHSSc news

Foundation Against Pulmonary Hypertension provides information and support in webinar series

Fundación Contra la Hipertensión Pulmonar (FCHP) organised a series of webinars to provide expert information and support for its members. The webinars focussed on the following topics.

Alpha-1 activities

Alpha1 Germany holds first ever Virtual Children and Youth Day

Due to the COVID-19 pandemic, Alpha1 Deutschland held their annual Children and Youth Day online. Dr Eva-Doreen Pfister, an experienced speaker from the Medical University of Hanover, recorded her presentation in advance to show during the event. Dr Pfister explained the interrelationships and effects of Alpha-1 antitrypsin deficiency (AATD) on children and adolescents in a clear and interesting way. They then held a question and answer session for parents, which was very well received.

Watch the webinar.

Alpha-1 Spain publishes comic book “Soy Alfa”

Alfa-1 España presents “Soy Alfa” (“I’m Alpha”), a comic book that explains the day-to-day life of people with Alpha-1 antitrypsin deficiency (AATD) to young people. It includes recommendations and guidelines on lifestyle habits for healthier lungs. The book, available in PDF and print edition, was designed by the illustrator Mr Reny, based on texts by members of Alfa-1 España.

Find out more and access the book.

Alpha-1 Plus Belgium members take part in “Walk & Talk for Alpha-1”

For Alpha-1 Awareness Month in November, Alpha-1 Plus members registered to the ‘Walk & Talk for Alpha-1″ virtual walk, organised by the Alpha-1 Foundation. They walked with campaign signs and face coverings, and shared photos on social media to raise awareness about AATD. Their achievements can be found on their LinkedIn page.