Patient Organisation Round-up: December 2024

Respiriamo Insieme provide education on asthma and rare lung diseases to the public.  

The PerCORSA di salute project aims to raise awareness about prevention to people living with asthma and rare lung diseases. Teaching people the importance of a healthy lifestyle and raising awareness of vaccination are some examples of the project’s activities.  

A press conference for the PerCORSA project was held in Rome on 12 November and focussed on the needs and responses of people with chronic lung diseases to therapy. The event was an opportunity for experts to discuss the challenges faced by people living with chronic lung disease and give updates on treatments.  

The project is planned to continue in the south of Italy in 2025. 

The Spanish COPD association (APEPOC) spoke with the Head of Sustainability at the Ministry of Health alongside other experts this month.  

There were discussions on how to reduce the carbon footprint of inhalers. Inhalers can be used to manage lung conditions like asthma and chronic obstructive pulmonary disease (COPD). There are 3 main types of inhalers. One type of inhaler, called a metered-dose inhaler, uses gas to push medication into the lungs whilst dry-powder inhalers allow medication to be breathed in as powder. Studies have shown metered-dose inhalers to release harmful chemicals that contribute to global warming. 

The experts discussed how switching from metered-dose inhalers to dry-powder inhalers as recommended by healthcare professionals could reduce carbon footprint. 

Learn more. 

The Respiralia Foundation work to raise awareness and improve the quality of life for people living with cystic fibrosis. Last month they presented the annual Rosa del Mar Award to Teresa Llull. 

Teresa joined Respiralia in 1989 when her grandson was diagnosed with cystic fibrosis (CF) and is now president of the association. She has helped advance the field of cystic fibrosis over the last 35 years. Some of her activities include contributing to the approval of National Cystic Fibrosis Day and supporting people living with the condition.  

Learn more. 

Cystic Fibrosis (CF) Europe have taken part in activities related to the Twinning Expansion Project over the past 2 months. 

In October, CF Europe co-hosted the South Eastern European Conference alongside Romanian patient organisations. Members also attended the 4th International Medical Conference in Poland in November. 

CF Europe also worked to raise awareness of events during European Cystic Fibrosis Week in November. Its members are inspired by the determination of its member organisations and are committed to advocating for the condition in the new year. 

Learn more about the Twinning Expansion project. 

The Association of Respiratory Patients of Malaga (ALERMA) work to improve the quality of life for people living with all lung diseases. 

Its members recently took part in Proximity Week in Malaga. This event is an opportunity for local organisations to share their activities and learn how one another are working for a more sustainable city.  

The European Forum for Research and Education in Allergy and Airway Diseases (EUFOREA) are keen to improve the quality of life for people with these conditions. Nasal polyp syndrome is an allergic condition that is associated with asthma but often ignored in the field of lung health. 

After highlighting nasal polyp syndrome on Global Chronic Rhinosinusitis with Nasal Polyps Awareness Day, EUFOREA want to highlight their series of patient videos around the condition and how it impacts their daily life.  

Watch the videos.  

In November, PHA Europe hosted their Annual Pulmonary Hypertension European Conference in the Spanish city of Castelldefels.  

The event united over 70 delegates from 37 countries around the world. It was an opportunity for members of different pulmonary hypertension (PH) associations to network and exchange knowledge around the condition. 

Healthcare professionals are also invited to the event and this allows patients to communicate directly with medical experts. This strengthens the PH community and drives members towards shared goals such as better diagnosis and care for the condition. 

On 23 November Pulmonary Hypertension Association the Netherlands National Pulmonary Hypertension (PH) Information Day welcomed over 160 patients, caregivers and experts.  

The event was chaired by Dr Sanne Boerman and featured talks from experts around the basics of the condition and its treatments. Attendees shared their experiences with others and had a platform to speak with medical experts. 

The event gave PH Association the Netherlands more knowledge and hope for the condition and reminded them of the importance of community. 

Learn more. 

MNT Mon Poumon Mon Air supports people affected by non-tuberculosis mycobacterial (NTM) infections. 

On 14 and 15 November, MNT Mon Poumon Mon Air presented their activities at the Group of Research and Education in Pulmonary Infection (GREPI) Congress 2024. The event was held near Paris and gave attendees the opportunity to meet with lung health experts and discuss the latest research in lung health. 

MNT Mon Poumon Mon Air want to thank the French Pneumology Society (SPLF) for giving them the opportunity to attend the event.  

Patienten Rat und Treff (The Patient Council & Meeting Belgium) organise campaigns on various health topics and supports people living with diseases, including lung disease. 

The organisation are planning activities for Rare Disease Day on 28 February 2025. As part of their activities, they plan to light up buildings in Europe and will interview people who have experience of living with a rare disease.

Follow Patienten Rat und Treff on social media for the latest updates. 

The BHD Foundation is excited to announce the publishing of the European Reference Network’s (ERN) first European clinical guidelines for the diagnosis and management of Birt-Hogg-Dubé syndrome (BHD). BHD is a rare genetic condition that affects the skin, lungs and kidneys. 

People living with BHD and their healthcare providers have not had enough information on how often patients should be attending BHD appointments. This has led to different standards of care between countries and anxiety around patients’ health. 

The new ERN GENTURIS guidelines recommend how BHD syndrome should be diagnosed and managed by across Europe. The ERN GENTURIS BHD guidelines advise European healthcare professionals by: 

1. Setting clear diagnostic criteria for when to test a patient for BHD 
2. Setting a lifelong standard of care for BHD patients 

Learn more. 

On 15 November, the Alpha-1 Europe Alliance hosted a landmark meeting in Brussels titled “Achieving Equity in Access to Treatment for the Alpha-1 Community in Europe: Building a Roadmap to 2030.” The event was an opportunity for stakeholders to discuss the inequalities in treatment for people living with Alpha-1 Antitrypsin Deficiency (AATD).  

Members of Alpha-1 Europe Alliance, healthcare professionals and policymakers attended the event. There was a focus on current challenges in AATD, including access to treatment within the panel discussions. Through working together, attendees laid the foundation for the Alpha-1 Europe Alliance’s 2025-2030 advocacy roadmap. This will ensure access to care and improve treatment standards across Europe. 

Learn more about Alpha-1 Europe Alliance’s plans for 2025-2030.

November was Lung Cancer Awareness Month. ALK+ UK worked alongside EGFR+ UK and the Ruth Strauss Foundation to highlight the challenges of living with mutation-driven lung cancer in the ‘All You Need is Lungs’ campaign.

26 people living with the condition shared their experiences throughout the month. Their voices helped to break down stigma and highlighted the importance of taking symptoms seriously.

The efforts have achieved over 500,000 impressions and its key message reminded the public that anyone can get lung cancer even if they are non-smokers and challenged misconceptions around the disease.

Learn more about the campaign and how you can get involved in 2025.

The Global Allergy and Airways Patient Platform (GAAPP) raised awareness of chronic obstructive pulmonary disease to mark World COPD Day on 20 November. 

GAAPP’s Vice President of Education spoke in a briefing titled ‘Fighting for Air: Reducing the Burden of COPD through Policy’ and called for more funding to help people living with the condition. 

Learn more.