News

Patient Organisation Round-up: October 2024

Catch up on the latest news and activities from patient organisations across Europe.

The BHD Foundation prepare for the BHD Patient Symposium
The BHD Foundation prepare for the BHD Patient Symposium

The BHD Foundation prepare for the BHD Patient Symposium

The BHD Foundation supports those with Birt-Hogg-Dubé (BHD) syndrome, a rare genetic condition affecting the lungs, skin and kidneys.

 

The BHD Foundation online Community Symposium will take place between 14:00 and 19:30 CEST on the 12 October 2024. This year, there will be a focus on the holistic support of people living with BHD.

 

Sessions will provide information for families of people living with BHD and those with recent diagnoses. There will also be a workshop on ‘Living Well with BHD’, hosted by the rare condition counselling organisation, Rare Minds. 

 

The event is free to attend, and a recording of the event will be sent to those attendees. Register here.


The Aspergillosis Trust attend the ELF Patient Organisation Networking Day
The Aspergillosis Trust attend the ELF Patient Organisation Networking Day

The Aspergillosis Trust attend the ELF Patient Organisation Networking Day

During September, the Aspergillosis Trust attended the ERS Congress and Patient Organisation Networking Day for the first time in person. The theme of the Patient Organisation Networking Day was ‘Driving Policy and Healthcare Change’, where attendees could listen to patient speakers and network with others.

 

The breakout sessions were also found to be informative. Many attendees realised that everyone living with a lung condition faces similar issues, regardless of their background. The Aspergillosis Trust found it valuable to network with other patient organisations and are excited to attend other events in the future.

 

Aside from attending the ERS Congress, the Aspergillosis Trust have recently been busy producing more awareness materials and new items for their shop. Visit the website to find out more.  


MNT Mon Poumon Mon Air attends the Forum for Associations in Paris
MNT Mon Poumon Mon Air attends the Forum for Associations in Paris

MNT Mon Poumon Mon Air attends the Forum for Associations in Paris

MNT Mon Poumon Mon Air aims to support people living with non-tuberculosis mycobacterial (NTM) infections. NTM infections are often rare and non-contagious and its treatment is often complicated by side effects. 

 

Recently, MNT Mon Poumon Mon Air attended a forum for associations at the Maison de la Vie Associative in Paris. This gave the organisation an opportunity to network with other local organisations and explain their activities and future goals.


EUFOREA welcome Xander Bertels as the new Patient Advisory Board manager
EUFOREA welcome Xander Bertels as the new Patient Advisory Board manager

EUFOREA welcome Xander Bertels as the new Patient Advisory Board manager

The European Forum for Research and Education in Allergy and Airway Diseases (EUFOREA) aim to reduce the prevalence of allergy and airway disease by advocating for people living with these chronic conditions.

 

EUFOREA recently welcomed Xander Bertels as the new Patient Advisory Board and Advocacy Manager. The Patient Advisory Board is an opportunity to share the unmet needs of patients, suggest how their care could be improved and explore ways to boost political awareness of these conditions.


Canada Steps Up to Tackle the Crackle
Canada Steps Up to Tackle the Crackle

Canada Steps Up to Tackle the Crackle

The Canadian Pulmonary Fibrosis Foundation have recently launched a global initiative, named “Tackle the Crackle ©”. The aim of this campaign is to educate medical professionals and the public about the early signs of pulmonary fibrosis (PF).  

 

To mark Pulmonary Fibrosis Awareness Month in September, lung specialists from across Canada walked in branded clothing to raise awareness and funds for PF. Learn about the early PF symptoms and how to #tacklethecrackle here.  


The Alliance for Pulmonary Hypertension advocate for increased patient involvement in drug development
The Alliance for Pulmonary Hypertension advocate for increased patient involvement in drug development

The Alliance for Pulmonary Hypertension advocate for increased patient involvement in drug development

At the 2024 European Society of Cardiology (ESC) Congress, Pisana Ferrari, member of the ESC Patient Forum and Secretary General of the Alliance for Pulmonary Hypertension, emphasised the importance of including the perspectives of people living with lung conditions in pulmonary hypertension clinical trials. 

 

Pisana highlighted the value of sharing the experiences of those with lung conditions within healthcare. Despite the progress involving patients in healthcare decisions, Pisana noted that their participation in research remains limited. Referring to a recent European Medicines Agency (EMA) survey, she highlighted that patient input influenced only 20% of scientific advice.

 

This highlights the need for early patient involvement in drug development. Although her talk focused on pulmonary hypertension, her message advocates for broader patient inclusion across all medical fields to improve treatment outcomes. Read more. 


The Spanish COPD Patients' Association speaks about the effects of COPD on mental health
The Spanish COPD Patients' Association speaks about the effects of COPD on mental health

The Spanish COPD Patients' Association speaks about the effects of COPD on mental health

On 26 September, Dr Gema Lopez, psycho-social counsellor at the Spanish COPD Patient’s Association (APEPOC) and professor of psychology spoke during a webinar and provided advice for people living with lung disease to improve their mental health.

 

This comes after evidence stating that the risk of mental health issues, including anxiety and depression, increases from 10% in the general population to 40% in people living with chronic obstructive pulmonary disease (COPD). In addition, the rate of panic disorder is approximately 10 times higher in COPD compared to the general public. This data highlights the need for appropriate management.

 

Watch the webinar recording here (Spanish.)


INSPIRAT host a webinar for people with lung disease
INSPIRAT host a webinar for people with lung disease

INSPIRAT host a webinar for people with lung disease

The Colombian Foundation for Lung Cancer, Asthma, COPD and other respiratory and oncological diseases (INSPIRAT) recently organised a virtual event alongside the FIQUIRES Foundation to help improve the quality of life for people living with lung disease. The importance of physiotherapy for people with lung conditions was highlighted. 

 

Attendees learned how to control shortness of breath, improve ventilation and treat lung infections. Physiotherapist, Dr Diana Maritza Suancha Suárez, spoke about the role of the lungs and their relationship with the bloodstream to generate oxygen in the body during the event. From this, attendees were taught the importance of exercise and medications in preventing symptoms of lung disease. Watch the recording here. 


Respiriamo Insieme joins the Permanent Assembly of Citizens‘ and Patients’ Organisations in the Veneto Region
Respiriamo Insieme joins the Permanent Assembly of Citizens‘ and Patients’ Organisations in the Veneto Region

Respiriamo Insieme joins the Permanent Assembly of Citizens‘ and Patients’ Organisations in the Veneto Region

Respiriamo Insieme is among the 108 Citizens‘ and Patients’ Organisations that have been selected to participate in the Permanent Assembly of Citizens‘ and Patients’ Organisations of the Veneto Region.  

 

The assembly will provide a forum for associations to discuss the various health and sociomedical issues of the Veneto region. Respiriamo Insieme are excited for this new opportunity.


EU-PFF campaign for Pulmonary Fibrosis Awareness Month
EU-PFF campaign for Pulmonary Fibrosis Awareness Month

EU-PFF campaign for Pulmonary Fibrosis Awareness Month

September marked Pulmonary Fibrosis Awareness Month. Throughout September, EU-PFF highlighted the importance of ensuring equal access to oxygen for people living with pulmonary fibrosis through their Breathing Life campaign. 

 

Access to oxygen is a key issue for many people living with pulmonary fibrosis and EU-PFF wanted to highlight the challenges patients face in accessing oxygen therapy. The organisation shared educational resources, expert interviews and stories from people living with pulmonary fibrosis, to create meaningful discussions on the topic. There was a firm call for oxygen therapy to be recognised as a human right. 

 

Many people, including healthcare professionals and those living with the disease got involved in the discussion. There was strong engagement on social media, with many using the hashtags: #BreathingLife, #OxygenAccess, #CurePF and #PFMonth. 

 

The campaign’s achievements underscore the impact of community-driven advocacy, and EU-PFF want to thank everyone who supported the campaign. 


SarcoidosisUK Patient Day
SarcoidosisUK Patient Day

SarcoidosisUK Patient Day

SarcoidosisUK will host a Patient Day on the 15 October. The event will take place online from 08:00 – 11:30 CEST and will be an opportunity to hear people living with sarcoidosis discuss a range of topics.  

 

There will be a focus on patient involvement, with an opportunity to ask questions. Sessions from the event will be recorded and posted on the SarcoidosisUK website, with a transcription after the event. Register here.


The world will light up blue for World Pneumonia Day 2024
The world will light up blue for World Pneumonia Day 2024

The world will light up blue for World Pneumonia Day 2024

To mark World Pneumonia Day on 12 November, NEUMOAI have begun the Pneumolight campaign. So far, 303 monuments from 34 countries will light up blue to raise awareness of pneumonia. Pneumolight encourages all organisations and the general public to get involved.

 

As part of the campaign, people are also invited to participate in the 4th Global Conference for World Pneumonia Day. This hybrid conference will take place in Manila this year and is an opportunity to learn more about the impact of the disease.

 

Together, we can all help to improve the outcomes for people living with pneumonia. Register here.


A race against cystic fibrosis
A race against cystic fibrosis

A race against cystic fibrosis

Every year, Respiralia host the Solidarity Kilometers against CF event. The aim of this event is to raise awareness of cystic fibrosis (CF) and improve outcomes for people living with the condition. There was a record number of people who took part in the event this year, with 715 total registrations.

 

Whilst the event offers an opportunity to show solidarity with people living with CF, it also allows those living with the condition to take part in the race and demonstrate their willingness to advocate for others with CF. From the record number of people who took part this year, Respiralia have raised funds to offer over 500 treatment sessions for young people living with CF. Find out more.


PAHSSc host their first PF Patient School event
PAHSSc host their first PF Patient School event

PAHSSc host their first PF Patient School event

The first Patient School event, hosted by the Pulmonary Hypertension and Scleroderma Patient Association (PAHSSc) took place on the 28 September in Ankara. 

 

President of PAHSSc, Meltem Ak, addressed the different stages of the patient journey. PAHSSc want to thank the experts and patient advocates who spoke at the event.

 

See more on Instagram.


PHA Europe attend the ERS Congress 2024
PHA Europe attend the ERS Congress 2024

PHA Europe attend the ERS Congress 2024

In September, PHA Europe attended the ERS Congress 2024, which brought together nearly 20,000 participants to advance lung health.  

 

The president of PHA Europe, Eva Otter, spoke during the session “Changing PAH Patients’ Lives: Shared Decision-Making from Diagnosis.” This session highlighted the importance of including patient perspectives in care. Eva’s discussion focussed on the diagnosis of PAH and the need for those living with the condition to talk about their condition, which she also presented during a poster session. 

 

PHA Europe are also proud of Natalia Maeva, who shared her personal lung transplant journey at the European Lung Foundation and ERN-LUNG transplantation forum. In this session, Natalia shared valuable insights and discussed how support can be improved for transplant patients in the future.  

 

PHA Europe remains dedicated to advocating for patients and ensuring that their voices are heard to advance research and care for pulmonary hypertension. Read more.


Ukrainian Respiratory Coalition: a new chapter in the fight for respiratory health
Ukrainian Respiratory Coalition: a new chapter in the fight for respiratory health

Ukrainian Respiratory Coalition: a new chapter in the fight for respiratory health

In August 2024, the Ukrainian Respiratory Coalition (URC) was established, marking a significant step forward in the efforts to improve lung health in Ukraine. The URC unites patients, healthcare professionals, researchers and decision-makers to address the challenges faced by those with lung disease during the war.  

 

Founding members of the URC include the Ukrainian Pulmonary Hypertension Association, the Ukrainian Association of Allergologists and the National Pirogov Memorial Medical University.  The focus of the URC is to support people with lung diseases and ensure access to healthcare. Other priorities include raising awareness about air quality, which has been worsened by the ongoing conflict.  

 

Through international partnerships, the URC aims to share best practices in diagnosis, treatment, and patient education. In September, the URC held its inaugural meeting at the ERS Congress, beginning its collaboration with the International Respiratory Coalition. Future plans for the URC include expanding its activities across Eastern Europe, with a focus on air quality monitoring and education. The URC welcomes any interested organisations to join and improve lung health in Ukraine.