Patient Organisation Round-up: June 2023

Catch up on the latest news from patient organisations in our network.

The importance of patient organisations

The Spanish COPD Association, APEPOC, has participated in the event “The importance of patient organisations“. The aim was to analyse the contributions and barriers of patient organisations today. Patient organisations work to strengthen the organisational and governance structures of their members with the aim of helping them to become more resilient, sustainable and effective. They work to promote health literacy to help patients make sound healthcare decisions for themselves. They produce and review health-related information to make sure that information provided to patients is of high quality and accessible. Furthermore, patient organisations provide peer mentoring, counselling or listening services. All participants agreed that their work is essential to disseminate information and needs from patients and families to policymakers, scientific societies and health care professionals.

PAHSSc’s May activities

To promote better access to crucial medications, the Pulmonary Hypertension and Scleroderma Patient Association (PAHSSc) had a representative participate in a press conference arranged by the Rare Diseases Network (NHA). The primary objective was to shed light on the difficulties patients encounter when trying to obtain essential drugs. A particular focus was placed on the ongoing efforts to make infused Treprostinil, a drug used to treat pulmonary arterial hypertension, more accessible to regular users. On World PH Day, PAHSSc members held their first informal face-to-face meetings since the COVID pandemic. They met  in Istanbul, where patients and their caregivers shared their experiences and raised funds with donated handmade products. Additionally, in collaboration with ADHAD (Akciğer Damar Hastalıkları Araştırma Derneği), an event was organised in Ankara to bring together patients and doctors to sing songs and recite poems, aiming to raise awareness about pulmonary hypertension. They further joined forces with the Turkish Cardiology Association to publish news articles in national media, focusing on pulmonary hypertension. PAHSSc members and their families continued to donate organs in May. PAHSSc also proudly announced its full membership of the European Pulmonary Fibrosis Federation, highlighting their dedication to international cooperation. PAHSSc demonstrated its commitment to improving the quality of life of individuals in need by providing a portable oxygen concentrator, which restored mobility and independence to a patient.

ALK+ UK harnesses the power of social media

ALK Positive UK recognises the significance of social media in today’s digital age and has recently expanded its online presence, including a venture into TikTok. With the appointment of their new Social Media Manager, Laura Jones, they are taking strategic steps to create valuable and engaging content and to leverage the potential of social media.  They are already seeing great results, with their latest Instagram insights showing a big increase in reach and engagement. The launch of their TikTok account has enabled them to begin a dialogue with a new younger audience.  Debra Montague, ALK+ UK Chair says: “Social media provides a unique opportunity to reach a vast and diverse audience. Many of our members find us through social media channels, so it’s crucial that we establish an effective presence. The broader exposure social media provides will lead to increased awareness, and ultimately, the opportunity for us to help more ALK-Positive patients.”

PHA Participates in World Heart Federation Forum

The president and CEO of the Pulmonary Hypertension Association (PHA), Matt Granato (pictured here on the left), recently participated in the World Heart Federation forum on rare cardiovascular diseases. Matt represented PHA and the pulmonary hypertension (PH) community at the event in Geneva, Switzerland, with Lauren Janzen (pictured on the right), a patient and advocate from Wisconsin, USA. Matt discussed PHA’s achievements in patient advocacy, such as empowering patients to be their own best advocates and working with them and their caregivers to share their stories with policy makers.

Lauren shared her PH story in a panel of people with rare cardiovascular diseases. She discussed her diagnosis and how she finished nursing school and become a mother through adoption while managing her disease. “Lauren’s story was very powerful and demonstrated the determination and courage PH patients develop while taking back control of their health and their lives,” Matt said. “We heard similar stories from the other rare CVD patients, which highlights the importance of working together to tackle common challenges.”

United to Cure PH: World PH Day 2023

On 5 May, the Pulmonary Hypertension Association (PHA) joined the international pulmonary hypertension community to celebrate World PH Day 2023. PHA’s World PH Day 2023 focus was “United to Cure PH”. The theme recognised the global strides made in improving the lives of those affected by pulmonary hypertension and highlighted the shared goal of finding a cure. While many of the World PH Day 2023 festivities took place virtually, PHA hosted two in-person events on Saturday 6 May, including an O2breathe fundraising walk near Detroit, Michigan.

Also on 6 May, PHA hosted a free patient and caregiver workshop in San Diego, California. During this day-long educational event, attendees connected with other people with PH, caregivers, family members and healthcare professionals. They attended education sessions on diagnosis and treatment, living with PH, and disease management. At the end of the workshop, attendees were invited to participate in a heart-shaped walk outside (route pictured below).

New spin-off group from the Respiralia Foundation

The Respiralia Foundation is very happy to share that, with the support of the University of Valencia, it has created “Evolving Therapeutics”. This is a spin-off group that aims to develop the phage therapy research project and produce phages targeted at the different bacteria that affect humans, animals and plants. You can read more about it on their website:

FairLife L.C.C. opens the discussion in Greece about lung cancer stigma with the bold, emotive campaign “Ask the right question”

FairLife L.C.C launched an awareness campaign “Ask the right question” about lung cancer in order to highlight an important social issue — the stigma of lung cancer patients, related to the habit of smoking. The campaign was first launched in Canada and Australia, and is now being run in Greece by FairLife L.C.C.

The campaign aims to eliminate the stigma for people affected by lung cancer, which is often defined as the “smoker’s disease”. It aims to change this perception, by skipping the question “Did you smoke?” and treating each patient equally.

The campaign “Ask the right question” features real stories of patients, caregivers and family members who are impacted by lung cancer. The idea is to show how different people communicate their own stigma message through storytelling. At the same time, the campaign raises awareness of prevention and a Fair Life for the lung cancer community.


ALERMA celebrated World Asthma Day with three activities

1) An information table was set up in the Hospital “Virgen de la Victoria” in Malaga, to inform patients about asthma and raise awareness by talking to the media and handing out information leaflets.

2) We attended the Patients’ School, organised by the Pneumology Service at the aforementioned hospital. We provided information about the disease and the importance of respiratory physiotherapy and ran a workshop on how to use inhalers.

3) Finally, we carried out a walk along the Paseo Marítimos of Málaga and a fitness session, to highlight the importance of exercise for asthma. This activity took place on the following Sunday, as it was World Asthma Day. At the end of the walk, two medals were awarded to the oldest and youngest participants, and there was a raffle for a beach game to raise funds for ALERMA.

AIB-APS learn about the importance of physiotherapy

AIB-APS recently attended the 5th International Congress on cardiorespiratory physiotherapy presented by ARIR and held in Rome May 11–13. It was a really helpful opportunity to meet professionals, connect with other lung disease related foundations, share experiences and emphasise the importance of respiratory physiotherapy in the management of respiratory diseases such as bronchiectasis.

A variety of activities from Respiriamo Insieme in May

1) The World Asthma Day (WAD) is organised by the Global Initiative for Asthma founded in 1993 and is held every May to raise asthma awareness worldwide. The National Patient Association Respiriamo Insieme (RI), in collaboration with the Careggi Hospital in Florence, organised a free information and prevention space for everyone in the entrance.

2) On 11 May RI launched the new Device4Patients project, implemented by the Respiriamo Insieme Association in collaboration with the Italian Association of Physiotherapists, to help both patients and healthcare professionals in the proper use of inhalation therapy devices. Because one thing is certain: doing therapy well is the main weapon to control and manage the symptoms of the disease.

3) On 18 May, Respiriamo Insieme, with the support of its Scientific Committee and distinguished nationally and internationally renowned researchers, launched an observational study on the use of allergen-specific immunotherapy in Italy. RI commented that as an association that supports the management of lung diseases for many hundreds of allergic patients every year, they frequently find that specific immunotherapy is still not a real option for the patient. With this study, they would like to gather scientific evidence for this treatment to be used across various regional health services.

4) On Saturday 27 May in Novara, Italy, RI held the “RESPIRart: the hospital breathes with the citizen” event. Free spirometry tests were offered to everyone in the hospital’s courtyard. Also, at the Hospital’s Aula Magna, Prevention, Health and Art were discussed with local authorities.

5) Respiriamo Insieme, in collaboration with the Italian National COPD Association, attended a meeting in Rome on 30 May with policymakers and all health professionals involved at the Senate of the Republic to shine a spotlight on the needs of people with COPD, increase awareness of the disease and enhance prevention, diagnosis and treatment interventions. The in-person event was broadcast live on the Senate WebTV.

6) To mark World No Tobacco Day, on 31 May RI were outside the Careggi Hospital together with healthcare professionals from the hospital for a morning of prevention, information and health.

“Put yourself in my shoes” campaign from Sevilla Respira

On 2 May, a stand was set up in the Faculty of Education of the Hospital Universitario Virgen Macarena. It was very well attended and very well accepted by students and teachers. The activity was to get on a bicycle and pedal the kilometres that the participants voluntarily wished to do in order to win a prize. With this challenge the organisation managed to put themselves in the place of people with asthma and give more visibility to this pathology to the society in general. The objective of this campaign was also to attract new members, which they were able to achieve.