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PAHSSC celebrate World Pulmonary Hypertension Day

Patient organisation round-up: July 2019

This month, patient organisations have been running fundraising events to continue their support for people living with lung conditions. Others have held annual general meetings to review the progress made in the last year, and to look at how they can further strengthen their work and support in the future.

Image: The British Lung Foundation’s launch of Love your Lungs week

British Lung Foundation (BLF) launches Love your lungs week

The British Lung Foundation (BLF) launched Love your lungs week on 17-23 June. Building on the success of ‘Breathe Easy’ week in previous years, the BLF wanted to make their lung health awareness week even more ambitious this year. The focus was on early diagnosis and breathlessness, and the BLF encouraged anyone worried about feeling breathless to take their online breath test.

There were also fundraising and awareness raising events held across the UK, including a run and cycle at the BLF head office.

Fundación Contra la Hipertensión Pulmonar (FCHP) holds charity football match

Last month the Foundation Against Pulmonary Hypertension (FCHP) organised a charity football match to raise money and awareness for pulmonary hypertension (PH), donating funds to the EMPATHY project, a research collaboration for PH. Participants included police officers as well as patients and family members – a young child kicked off the game alongside her mother and grandfather. It was also an opportunity for the players to wear the new design of the organisation’s t-shirt.

Read the full article.

PF Trust raises money through Picnic in the Park event

On 2 June the Pulmonary Fibrosis (PF) Trust had their annual Picnic in the Park. Despite some rain there was a great turn out and hundreds of people turned up to enjoy live music, many stalls, food vans and a fair. This year an amazing £2125 was raised and will go towards helping people living with Pulmonary Fibrosis.

Fondazione Ricerca Fibrosi Cistica (FFC) raises money in swim across the sea

More funds have been raised to support cystic fibrosis research thanks to the Italian Cystic Fibrosis Research Foundation (FFC)’s exciting fundraising event last month. Participants, including the organisation’s president, Matteo Marzotto, faced the challenge of swimming across the Strait of Messina, starting from the Sicilian coast and arriving in Calabria.

Read the full article.

NTM Info & Research holds annual physician & patient conference

NTM (nontuberculous mycobacterial) Info & Research held their annual NTM & Bronchiectasis Physician/Patient Conference in Dallas, Texas. Faculties from the United States, Canada, Great Britain, and South Korea presented on a variety of topics related to pulmonary NTM disease to an audience of just under 300 healthcare providers, researchers, members of industry, patients, and caregivers.

FENAER creates video tutorials in multiple languages

FENAER has created open access video tutorials on various breathing exercises to complement pulmonary rehabilitation therapies. The tutorial is now available in English and Portuguese as well as Spanish, and will soon be available in Italian, French and German.

The Asthma & Allergy Network gets organisations across the globe involved in asthma campaign

Member organisations of the Global Allergy & Asthma Patient Platform (GAAPP) from around the world participated in the ‘Define Your Asthma Rights’ campaign throughout the month of May and June. They shared strong messages in multiple languages on World Asthma Day and raised awareness of severe asthma via the Severe Asthma Patient Charter on social media, which was globally impactful.

On 1 June GAAPP held its Scientific Meeting in Lisbon, Portugal in conjunction with the European Academy of Allergy and Clinical Immunology (EAACI). For the first time, both the president of EAACI and the European Respiratory Society (ERS) were at a meeting for patient organisations together.

Lung Foundation Australia launches new lung cancer campaign

Following the successful launch of the first lung cancer stigma awareness campaign in January 2019 (‘Stop Asking the Wrong Question About Lung Cancer’), Lung Foundation Australia launched a second campaign, ‘FFS! – Free From Stigma!’ The new campaign engaged 8 high-profile lung cancer specialist oncologists, nurses and researchers to front the campaign, share their stories and advocate for change, and reached up to 20.6 million Australians through the media. The Australian Labor Party responded directly to the campaign by committing $15 million to fund 20 new lung cancer nurses, if successful, in the Federal Election.

Find out more.

Pulmoner Hipertansiyon ve Skleroderma Hasta Derneği (PAHSSC) launches Turkey’s first educational programme about IPF

PAHSSC has started Turkey's first educational programme for people with idiopathic pulmonary fibrosis (IPF) and their relatives. The programme includes information about IPF, IPF treatment, lung transplantation options, and how to live well with IPF.

PAHSSC also launched a campaign to raise awareness of scleroderma, an uncommon condition that can cause breathing problems, as part of World Scleroderma Day on 29 June.

Read more of PAHSSC’s news.

PCD Family Support Group holds another successful AGM

The Primary Ciliary Dyskinesia (PCD) Family Support Group held another very successful PCD Day / Annual General Meeting (AGM) on 22 June. The day was a great opportunity to learn not only about the work of the PCD Family Support Group, but also about the latest medical and scientific research on PCD. The event was also a fantastic opportunity to meet and support other families and individuals affected by PCD. 

Find out more and listen to some of the presentations.

EU-IPFF sponsors the ILD-INN to support education for respiratory nurses

For the second year running, EU-IPFF has sponsored the Interstitial Lung Disease Interdisciplinary Network (ILD-INN) to support education for specialist respiratory nurses. Last year, nurses from Croatia, Belgium, Poland and Ireland came together with experts from ILD-INN to gain knowledge of ILD. This year EU-IPFF is giving €10,000 to support the programme, allowing nurses from Belgium, Poland and the Netherlands to also participate.

Aspergillosis Trust (AT) prints information leaflet and writes Patient Voice article

The Aspergillosis Trust (AT) has printed a Patient Information Leaflet on aspergillosis for individual patients, hospital clinics, GP surgeries and pharmacies. It was written by AT Co-founder, Sandra Hicks who is also a pharmacist and medical writer. Dr Darius Armstrong-James, an honorary consultant physician in infectious diseases and medical mycology, checked the leaflet. He is also setting up an aspergillosis clinic at Brompton Hospital, London. Please email jill@aspergillosistrust.org to check availability, if you would like any copies of the leaflet.

AT member Mike Chapman wrote a Patient Voice article titled ‘Living with allergic bronchopulmonary aspergillosis’ for the June 2019 issue of Breathe, an ERS publication. The article is free to access.

Alpha-1 Germany attends Alpha-1 Austria’s information day

On 14-15 June, Alpha-1 Germany attended Alpha-1 Austria’s general meeting and information day. It was a great meeting with lots of information about Alpha-1 deficiency. It was also a great opportunity to learn and to meet representatives of the Alpha-1 groups from other various countries.