For the first Patient Organisation Round-up of 2019, we asked patient organisations to share their recent news as well as their goals for 2019.
Picture: The Respiralia Foundation’s charity Christmas concert
This year, Alpha-1 Global and the Alpha-1 Foundation (USA) is organising the 4th International Research Conference on Alpha-1 Antitrypsin and the 7th Alpha-1 Global Patient Congress on 3-6 April 2019, at the Sheraton Riviera Hotel in Dubrovnik, Croatia.
The International Research Conference on Alpha-1 antitrypsin (3-4 April) is a meeting for invited researchers and discussants, yet open to any observers interested in the latest Alpha-1 antitrypsin research. The Research Conference will end with a reception and dinner for both Research Conference and Patient Congress participants.
The 7th Alpha-1 Global Patient Congress (5-6 April) will serve as a forum for Alpha-1 representatives from up to 40 countries to learn the latest scientific news, review advocacy strategies, hear the latest regional updates within the Alpha-1 community and interact with physicians, researchers and other key stakeholders.
Click here for more event information and to register.
Coinciding with World Aspergillosis Day on 1 February 2019, the Aspergillosis Trust has designed a large poster to appear on the back of buses running through London over a period of 4 weeks. The aim of the poster is to raise awareness of Aspergillosis, as such a small fraction of people have even heard of the condition.
The Co-Founder of Aspergillosis Trust, Sandra Hicks, has also written an article to be published in local newspapers, community magazines, football match programmes and gardening magazines, explaining the causes, symptoms and effects of the illness to help people better protect themselves against it.
This year, Aspergillosis Trust aims to:
In partnership with Pubblicità Progresso, the Italian Sleep Apnoea Association has produced a powerful 30-second advert as part of their 2018 campaign “Apnee notturne, non dormirci sopra” (Sleep apnoea, let’s not sleep on it) which highlights the importance of breathing well at night as well as during the day. The ad will be broadcasted on five major Italian TV channels and aims to help people spot symptoms for sleep apnoea, and encourages those who have symptoms to see a doctor to avoid developing more serious breathing problems.
The Respiralia Foundation ended the year with the celebration of their annual social event, “Rose of the Sea Fiesta against Cystic Fibrosis”, during which they presented the 2018 Rose of the Sea Award to Agora Portals International School for its contribution towards the fight against cystic fibrosis.
Respiralia Foundation’s vision for 2019 is to work alongside the programme “Educar es Salud en Fibrosis Quística” (“Education equals health in cystic fibrosis”), through which they will aim to transform the lives of children and young people living with cystic fibrosis by teaching them how to manage their condition and treatment independently.
To kick-start this work, Respiralia Foundation organised a Christmas charity concert to raise money for the programme. Attracting 220 people, the concert featured performances by youth choirs from local schools and raised a huge 801.20 euros for the programme.
The Pulmonary Fibrosis Trust is currently in the process of buying a caravan to give people with pulmonary fibrosis a chance to make happy memories with their families on holiday.
In 2019 the PF Trust aims to raise more awareness of PF in the UK and help more patients.
The Italian Cystic Fibrosis Research Foundation (FFC) ended the year by launching a Facebook campaign. As well as recognising the advances in cystic fibrosis treatment – as many people with the condition now reach adulthood – the campaign aims to underline the urgency to further increase life expectancy so that they can also grow old. The campaign encourages people to wear a crop top as a sign of solidarity with those living with cystic fibrosis.
FFC’s goal for 2019 is to raise enough funds to carry out some important projects such as the Task Force for Cystic Fibrosis, a strategic project aimed at finding a new corrective therapy for the most frequent mutation related to the condition, through which they hope to start a clinical trial.
Professor Francesco Bonella, Chairman of the EU-IPFF Scientific Advisory Board, and Liam Galvin, EU-IPFF Secretary, have co-authored an article for Health Europa to present the key findings of the EU-IPFF Benchmarking Report launched at the European Parliament in November 2017. The launch event was also an opportunity to present a call to action to improve the quality of life and treatment outcomes of people living with idiopathic pulmonary fibrosis (IPF), keeping rare diseases at the top of the policy agenda.
Download the EU-IPFF Benchmarking Report.
On 13 December 2018, during the last plenary session of 2018, the European Parliament held a debate based on an oral question on rare diseases addressed to the European Commission, which was initiated by EU-IPFF. EU-IPFF was keen to drive this process forward in order to convey a strong message to future European leaders about the need to sustain EU action to improve the lives of people living with rare diseases. EU-IPFF is committed to continue working with all relevant stakeholders to ensure that rare diseases remain a priority area at European and national levels.
The Respiriamo Insieme (Let’s Breathe Together) Association has recently launched a new campaign called “Chiamala col suo nome” (“Call it by its name”) which aims to distinguish severe asthma from asthma. They have produced a video featuring patients, specialists and policymakers; it puts into perspective the severity of this condition that affects 300,000 people in Italy. The video has attracted a lot of attention on YouTube, social media, and various websites.
In 2019, Respiriamo Insieme’s goal is to have as much patient participation as possible. They will be running events that offer free health checks such as spirometry tests and prick-tests followed by free health advice. One of their campaigns, “Respiriamo Aria Nuova” (“We breathe new air”) will be aimed at supporting children living with asthma and allergies through socioeconomic difficulties.
To celebrate 2018 and Christmas time, A.M.O.R O₂ organised a Christmas party, welcoming 100 patients and family members. During the meal, Dr Pasquale Berardinelli and the organisation’s chair, Dr Clemente Caminaghi, presented the key activities and successes of 2018.
This year, A.M.O.R O₂ aims to continue the psychological support work they began last year; this includes small support groups in the homes of their associates run by the psychologist, Dr Daniela Branà. Not only will they aim to help people with lung conditions mentally but also physically by helping them feel more relaxed, thus reducing pain and/or discomfort as a result of stress or anxiety.
“As usual, we will continue to work hard to ensure that all those who rely on us get the support and attention required for a better quality of life. It is essential to carry on working alongside ELF to be able to achieve our goals for the benefit of people with lung conditions and their families.”
Coinciding with their Christmas Alpha-1 and Active Lifestyle awareness campaign, Lovexair has produced a video featuring Arran Strong, a HappyAir ambassador. He was born with Alpha-1, but thanks to the support from Lovexair and his family, can compete in the world’s leading surf competitions. In 2019 he is working towards his goal: to be selected as part of the English National Surf team for the Tokyo Olympics in 2020.
Watch the video and find out more.
“Our key goals at Lovexair for 2019 are working with patients, healthcare professionals and stakeholders in providing care and research resources to their communities through the HappyAir ecosystem. Our ecosystem facilitates both training and resources to healthcare professional teams and therapists, as well as working directly with patients who learn to track their own outcomes in exercise, physiotherapy and lung care.”
“For the year of 2019, we will build on previous years’ momentum and continue our successful projects as World PH Day and other disease-specific initiatives with our partners and especially with our member associations. We are still committed towards our long-term strategy and will support multistakeholder activities, such as ERN-LUNG and the initiative related to improvement of transplantation situation in Europe.”
