News

Patient Organisation Round-up: April 2021

Patient organisations across Europe have been getting involved in a range of activities over the last month to support people affected by lung conditions. Many are planning to resume activities that were cancelled last year due to the pandemic, including annual fundraising events and conferences.

Last Update 12/04/2021

Updates from the cystic fibrosis community


CF Europe gets chosen as official charity for the Cross Lapland Marathon

Cystic Fibrosis Europe (CF Europe) has been chosen as the official charity for the Cross Lapland Marathon (CLM) taking place on 27 June. The CLM and outdoor trade show promote a sustainable community through sports, health, natural products and happiness. This virtual event gives CF Europe and members the opportunity to raise funds and show solidarity with people living with CF across Europe. For more information or to sign up, visit https://www.cf-europe.eu/2021/03/cross-lapland-marathon/

Fundació Respiralia returns to Formentera for annual swimming tour

The Respiralia Foundation is delighted to announce that they are going back to Formentera for their annual swimming tour around the Balaeric island. This is an important fundraising event for cystic fibrosis that was cancelled last year due to the COVID-19 pandemic. It is scheduled for 3-5 September 2021: https://www.respiralia.org/en/respiralia-2021-is-on-the-go/

The Foundation has released two more ‘informative capsules’, a new initiative to provide information about cystic fibrosis. They are available to watch here:

https://www.respiralia.org/en/schooling-of-children-with-cf/
https://www.respiralia.org/en/endurance-and-cf/

Updates from the lung cancer community


WALCE plans next meeting to educate and support lung cancer patients and caregivers

For the first part of 2021, Women Against Lung Cancer in Europe (WALCE) have confirmed virtual events to educate patients and caregivers.

At the end of January, a round table was organised among cancer patients and some pharmaceutical companies to discuss the impact that the health emergency and the pandemic have had on research and development of new drugs in the oncology field, on COVID-19 vaccines and on future prospects.

The next virtual meeting will be on 27 April and the main topics will be:

  • cancer disability: welfare and social security legislation
  • job protection for cancer patients
  • rights of caregivers
President of FairLife Lung Cancer Care shares her motivation for setting up the organisation at an important conference

The President of FairLife Lung Cancer Care, Korina Pateli-Bell spoke at an important conference on 2 March: Greece’s agenda for lung cancer in a post COVID-19 world

In the speech Korina explains her motivation for setting up the organisation:
“FairLife was born 4 months ago to fill a gap: That of a specific organisation dedicated to everyone affected by Lung Cancer in Greece. What inspired me to do this was my personal experience with my late husband Simon. Although Simon received first class treatment throughout, his cancer did not respond to chemotherapy and immunotherapy and the only recommended therapy from all experts around the world was to receive a novel drug available then within a clinical trial. Unfortunately, we found out that even though innovative drugs are available within clinical trials abroad, they remain inaccessible for patients in Greece, both because there are very few active clinical trials, but also because of bureaucracy and the legal framework, which poses significant obstacles. Simon, unfortunately lost the battle and I came to realise it wasn’t only the lung cancer that we were trying to beat.”

Watch the speech

Updates from the pulmonary hypertension community


PHA Europe holds virtual Annual Pulmonary Hypertension European Conference

The European Pulmonary Hypertension Association (PHA Europe) held its Annual Pulmonary Hypertension European Conference (APHEC) in March. Usually the conference takes place in Barcelona, Spain, but due to the pandemic it was held virtually this year. They aimed to make the conference as similar to a face-to-face event as possible; for example, participants entered a virtual hotel lobby to receive their badge and were greeted by one of the staff members and received a welcome address from the president. There was also an exhibition centre where the national associations had a booth with a description, videos and resources for participants to access. The Conference covered lots of interesting topics by specialists in the field of PH.

You can learn more about the event at: https://www.phaeurope.org/aphec/aphec-2020/

PAHSSc attends a range of meetings and conferences

The Pulmonary Hypertension and Scleroderma Patient Association (PAHSSc) has had a busy month filled with activities, including:

  • their annual general assembly, where they appointed new board members – they look forward to fresh ideas and perspectives that will carry the association to a more visible position;
  • listening to lung transplant patient stories on Instagram;
  • attending training sessions on increasing the capacity of non-governmental organisations;
  • taking part in meetings hosted by the Disabled Children Rights Foundation;
  • working alongside the Rare Diseases Network for various awareness activities;
  • participating in the PHA Europe Conference and translating the lectures into Turkish so that every member could have access to new developments in pulmonary hypertension.

Read more of PAHSSc’s news

PHA UK launches new publication to help patients access welfare benefits

The Pulmonary Hypertension Association (PHA UK) has published a new toolkit to help people prepare for welfare benefits assessments. The UK benefits system can be hard to navigate and the new publication aims to help patients feel prepared, so they have the best chance of getting what they are entitled to.

Access the publication

The charity has also published the latest issue of its award-winning member magazine, emPHAasis.

Access the emPHAsis magazine issues

PHURDA Ukraine hold photo session with celebrities in support of PH patients

In March the Pulmonary Hypertension Ukrainian Rare Disease Association (PHURDA) held a photo session. Local celebrities participated in support of people affected by pulmonary hypertension (PH). Singers, journalists and a nun took part in the event. Among them where: Oleksandr Bozhyk, Oksana Bilozir, Olga Tsap, Sister Dalila. They showed their support, respect, solidarity  and appreciation to the PH community in Ukraine and around the world.

Find out more about  the event on their Facebook page.

Updates from the pulmonary fibrosis community


Action for Pulmonary Fibrosis launches information pages in 9 conditions

Action for Pulmonary Fibrosis (APF) was originally set up to support people with idiopathic pulmonary fibrosis (IPF) but has now expanded to cover all forms of pulmonary fibrosis (PF). With this in mind, they have launched nine new condition pages on their website to keep people informed and supported. The organisation is delighted to have widened their audience, actively reaching and representing more people with different types of PF. Access the different condition pages: https://www.actionpf.org/information-support/pulmonary-fibrosis-conditions

APF’s survey with the James Lind Alliance to identify the top ten priority areas for PF research is still open to anyone affected by this condition including: patients, carers, bereaved family and friends and healthcare professionals. It is simple to complete with just three questions to answer. To complete visit https://www.actionpf.org/research/james-lind-alliance. A paper version is available by emailing info@actionpulmonaryfibrosis.org

 

Pulmonary Fibrosis Trust re-opens holiday caravan park for members

In the UK, the COVID-19 vaccine roll-out is progressing well; by now all PF patients should have had at least their first dose. This has allowed the UK Government to ease lockdown restrictions including the reopening of holiday parks from Monday 12 April. This means that patients can resume visiting the Pulmonary Fibrosis Trust’s holiday caravan. The onsite indoor swimming pool will be open, and for those brave enough, the site is next to the sea! It has been a difficult 12 months, but, at long last, things will soon be getting back to normal.

Updates from other respiratory patient organisations


TB Europe Coalition marks World TB Day with various webinars and patient stories

Last month TB Europe Coalition (TBEC) was involved in important webinars to mark World TB Day:

  • Together with the Regional Expert Group for Migration and Health they co-hosted a webinar on TB and Migrant Health in Eastern Europe and Central Asia (EECA). Watch the webinar and access the presentation
  • TBEC published some patient stories of 6 migrants who experienced TB. Read the patient stories
  • As part of the last MEP Lung Health Group meeting on World TB Day, TBEC together with the Global TB Caucus co-hosted a webinar on TB Research and Investment – lessons learned from the COVID-19 pandemic. Watch the event
  • They have published a Policy Brief: “Meaningful engagement of Civil Society and TB Affected Communities and the value of their role in TB Response”. Find out more and download the Policy Brief.
FENAER succeeds in advocacy efforts for simpler process to access triple therapy for COPD patients

The Spanish Congress of Deputies approved the simplification of the process to obtain the triple therapy for people with chronic obstructive pulmonary disease (COPD), an issue on which the Spanish Federation of Allergy and Airways Diseases Patients’ Associations (FENAER) had worked intensively. This means the elimination of a bureaucratic obstacle that slowed down and made it difficult for those affected by COPD to access this treatment.

Find out more

SarcoidosisUK celebrates Sarcoidosis Awareness Month, receives Points of Light Award and holds another COVID-19 Q&A

April is a special month for SarcoidosisUK and the sarcoidosis community; it is National Sarcoidosis Awareness Month in the UK and World Sarcoidosis Day on 13 April 2021. In recognition of these awareness campaigns, SarcoidosisUK have organised a range of exciting activities to suit a wide audience. These include fundraising activites, social media campaigning and patient-focussed events.

Find out more and how you can get involved

Run by the Prime Minister’s office, the daily Points of Light award recognises outstanding individual volunteers – people who are making a change in their community. On 9 March Henry Shelford, Trustee Chairperson of SarcoidosisUK, received the award in recognition of his work as a campaigner for people with sarcoidosis and the incredible difference he’s helped to make as part of SarcoidosisUK. Henry said:

“There have been so many dark days for all of us throughout this pandemic. So to be given an award that says you’ve provided some light in that dark is both delightful and humbling. I am truly thrilled and honoured to be given a Points of Light award. Thank you. I would not be able to have done a fraction of what I have without the wonderful people around me. A big thank you to them too.”

Read the full story

Henry also hosted a live Q&A about the COVID-19 vaccines with Clinical Board member Dr Robina Coker, Respiratory Consultant at Hammersmith Hospital. This is their eleventh coronavirus Q&A video and it answers important questions put to them by sarcoidosis patients about the COVID-19 vaccines.

Watch the Q&A

Lovexair brings together women in lung health

Lovexair brought together women in lung health – healthcare professionals and patient organisation leaders from across Ibero-american countries – to work together in the digital transformation era, addressing and bringing solutions for better respiratory health outcomes, in line with Breathe Vision 2030 and the WHO declaration. Their aim is to strengthen actions through joint efforts, empower individuals and their networks by delivering education, training and resources for better care, empathy and connectivity amongst patient-clinician communities. Leading the way for the next generation, in awareness and advocacy across Hispanic and Portuguese speaking people.

GAAPP launches new website and Twitter List for members

The Global Allergy & Airways Patient Platform (GAAPP) has recently launched its newly designed website, which is now available in 26 languages. Visit the website at https://gaapp.org/

GAAPP has also created a Twitter List for its member organisations so they can benefit from seeing all the Twitter activities of all GAAPP members at any time. Follow the GAAPP Members Twitter List.

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