Patient Organisation Round-up: November 2024

A record number of 175 delegates attended the third annual ALK+ UK lung cancer patient conference in September. The event was free to attend for ALK+ patients and over the weekend, patients and their families heard from leading experts who discussed the latest ALK+ therapies and clinical trials.  

ALK+ lung cancer is a rare form of the disease that is common in women under the age of 50 who do not smoke. The disease is often diagnosed at a late stage, making treatment difficult. However, Professor Sanjay Popat, medical oncologist, left attendees optimistic about the future of ALK+ treatments in his opening speech. Sanjay reflected on how much the ALK+ UK community had “grown and achieved since the first meeting in 2017.”

By raising awareness, ALK+ UK aim to improve the quality of life for people living with the condition.

Alpha-1 antitrypsin deficiency is a genetic condition that increases the risk of lung diseases including COPD. Since many people living with Alpha-1 are believed to be undiagnosed, raising awareness is important.

In October, over 60 people travelled to Ireland to attend the first Alpha-1 Patient and Family Meeting since 2019, held by Alpha-1 Foundation Ireland. This year marked 20 years since the first Alpha-1 conference held in Ireland. 

Experts discussed the latest news on treatments, diagnosis and support for Alpha-1. The meeting was also an opportunity for people with the condition to share their knowledge and included a presentation from an Alpha-1 patient who works as a psychotherapist.

November marks Pulmonary Hypertension (PH) Awareness Month. PH is a progressive and rare condition, marked by high blood pressure in the lungs and this can lead to failure in the right side of the heart. Every year, the Pulmonary Hypertension Association (PHA) launch a global campaign to raise awareness of the condition.  

This year, PHA are introducing the “Let Your Light Shine” campaign to celebrate the dedication of the PH community in raising awareness of the condition. Throughout November, PHA will spotlight its members who have “let their light shine” through advocacy, volunteering and fundraising. 

PHA encourage people living with PH around the world to take part and advocate for improved care and access to treatment. There are many ways this can be done, such as by patients sharing their experiences online, or volunteering to support others with the condition.

PHA have produced a social media toolkit for PH Awareness Month. Download social media covers and help raise awareness of PH here.

MNT Mon Poumon Mon Air are partners with RespiFIL (the Rare Respiratory Diseases Health Line).

MNT Mon Poumon Mon Air want to thank RespiFIL for their hard work advocating for people living with rare diseases. RespiFIL recently celebrated their 10-year anniversary at the RespiFIL Annual Day on 24 September.

Read more.

On 22 October, the Spanish COPD patient’s association, APEPOC, held a webinar to update the COPD community on research.  

Dr Marc Miravitlles, vice-president of the European Respiratory Society (ERS) and real-world evidence advisor for APEPOC, answered questions from patients and their families. Topics of discussion included: 

• What is real life data (RWE) and how has it changed recently?

• How do COPD co-morbidities (especially diabetes, depression, osteoporosis) influence the daily life of the patient?

• How can severe COPD be prevented?

• What are the differences between COPD in men and women?

• Does COPD look different in younger people?

• What do I need to be aware of at work to avoid COPD?  

• How is stem cell research going?

Watch a recording of the webinar.

The Aspergillosis Trust are helping researchers at University College Cork to understand the patient experience of using technology. They want to hear from patients who have taken part in clinical trials that involved the use of video calls or computers, instead of visiting a clinic.

By sharing your experiences, you can help to make sure that patients voices are heard and improve remote clinical trials in the future. 

If you are interested in taking part, please complete this survey.

Primary ciliary dyskinesia (PCD) is a rare genetic disease. The Association Dyskinésie Ciliaire Primitive (ADCP) aim to support people living with PCD and raise awareness of the condition.

Its members have recently released a video titled ‘Histoires de cils’ (Cilia Stories). The video discusses the challenges that people living with PCD and their families face. Watch the video here and on ADCP social media channels. 

World Pneumonia Day was on November 12 and provided an important opportunity to raise awareness about the disease and its impact on global health.

NEUMOAI took part in 2 activities on World Pneumonia Day. They held the 4th Global Conference for World Pneumonia Day, which focussed on ‘fighting pneumonia and antimicrobial resistance in Asia.’

335 monuments across 37 countries were also illuminated blue. People could raise awareness of pneumonia on social media using #WorldPneumoniaDay and #Pneumolight.

The European Forum for Research and Education in Allergy and Airway Diseases (EUFOREA) will celebrate its 10-year anniversary in 2025.  

The celebrations will begin with the launch of a patient portal in January. This will share information around prevention, healthy living and care for people living with lung conditions.  

EUFOREA will also hold an event on the 3rd Global Awareness Day for Nasal Polyp Syndrome in April. Patients and stakeholders in the field of lung health are invited to tackle the epidemic of chronic respiratory diseases. 

Learn more about their 2025 activities on the EUFOREA website.

The aim of Respiriamo Insieme is to make sure that everybody living with rare lung diseases can access treatment. The organisation recently celebrated 10 years of raising awareness with a performance of ‘The Nightingale and The Emperor: The Breath of Music’, an adaptation of work by Hans Christian Andersen.  

Over 400 people attended the event on 20 October at the Ristori Theatre in Verona. Respiriamo Insieme want to thank everybody involved in making the event possible and for their donations.  

Due to a high demand, work is underway to deliver the performance within Veneto schools. 

Lung Foundation Netherlands (Longfonds) are calling for people to take part in a study run by Maastricht University Medical Center.

The project is called the ‘Say Ahh Study’. It focusses on the possibility to prevent flare-ups of chronic obstructive pulmonary disease (COPD) by using a mobile app. The app tracks small changes in a person’s voice and can help to predict when COPD symptoms are at risk of worsening.

People with and without COPD are encouraged to get involved in the project. Taking part is easy, and has the potential to improve the quality of life for people living with COPD in the future.

Learn more.