Patient organisation round-up: March 2018

Learn more about what patient organisations across Europe and beyond have been doing to raise awareness of a range of conditions and improve the lives of people living with them over the last month.

Photo: Stefano Pavanello, FIMARP (centre) with Bastian Hauck, German Diabetes Association (left) and Wilson Merino Rivadeneira, Cecilia Rivadeneira Foundation (right) at the International Experience Exchange for Patient Organisations in Athens

New information booklet for alpha-1 patients in Poland

Alpha-1 Poland has launched the first Polish-language brochure about alpha-1 antitrypsin deficiency. The brochure will be distributed among people with alpha-1 and doctors to help raise awareness of the condition.

Alpha-1 Poland also launched their Twitter channel in February – and would be very happy if you would follow them

Vote for Respiramo Insieme and help children with asthma

Respiriamo Insieme needs your votes to secure funding support from the Aviva Community Fund. The aim of the project is to develop a video game for young people, including those with asthma and other lung conditions. The video game, ‘Asthma Game Over!’, will help young people to understand the social, emotional and psychological challenges faced by those with a lung condition.

Vote for Respiriamo Insieme

Hope for Dutch patients waiting for an organ transplant

The Dutch Pulmonary Fibrosis Society welcomes the recent approval of a new law in the Netherlands which will automatically make all adults organ donors unless they actively opt out. It is hoped that this law will address the large shortage of donor organs in the Netherlands and that those currently on the waiting list for a lung transplant will benefit.

The Dutch Pulmonary Fibrosis Society noted that, although there are some medications which can slow the decline of idiopathic pulmonary fibrosis (IPF), for people with advanced forms of the condition, a lung transplant is often the only viable treatment option. They hope that this new organ donor system will allow many more people with IPF to receive a life-saving transplant.

Italian organisation sharing experience and networking at an international level

From 1315 March, the Italian Federation for IPF and Rare Pulmonary Diseases (FIMARP) participated in the International Experience Exchange for Patient Organisations (IEEPO) 2018 in Athens, Greece. This was the first time FIMARP participated in the event, bringing the challenges of people with IPF to the global stage. It was also an opportunity to meet people from all over the world who dedicate their time to improving the treatment and care for people with a range of conditions.

Emergency kits to provide life-saving support for pulmonary hypertension

The Spanish Foundation against Pulmonary Hypertension (FCHP) has continued its programme to provide emergency care for pulmonary hypertension (PH), installing an emergency kit for children with PH who require oxygen treatment in a school in Madrid. 15 kits are now available in education facilities, ensuring access to basic equipment needed to treat a cardio-respiratory arrest.

FCHP has also been involved in a wide range of fundraising and awareness-raising events during February, all helping to support the Empathy Project, which aims to improve early diagnosis of PH and identify new treatments.

Updates from Respiralia Foundation

The Respiralia Foundation has recently organised a series of fundraising and awareness events. On 1 March, 2018, Balearic Islands Day, a solidarity concert for people with cystic fibrosis (CF) was held. The Son Dameto choir sang their new repertoire and helped to raise €1,900 to improve CF treatment facilities. The Foundation also benefited from a donation of €3,500 from Eroski Baleares, a supermarket chain, following their Christmas campaign to raise money for non-profits.

Find out more.

The Foundation has also re-launched their physical activity programme for children with CF and their families. The programme is delivered by experts in physiotherapy and physical activity.

Find out more.

National Association of Pulmonary Hypertension of Spain  marks World Rare Diseases Day

The Association participated in several interviews for TV and radio programmes on 28 February, World Rare Diseases Day, to raise awareness of pulmonary hypertension and the challenges people living with a rare condition face.

French patient associations actively participate in pulmonology and public health

The beginning of this year was rich for events devoted to lung conditions in France. The Fédération française des associations et amicales de malades insuffisants ou handicapés respiratoires (FFAAIR) presented the voice of patients in several events, including the congress of the Society of Francophone Pulmonology in Lyon, the Francophone Days “Alvéole” in Nantes and in the “Health for everybody” meeting in Paris.

FFAAIR organised sessions focused on important topics such as physical activity; communication between doctors and people with severe illness; pollution; and stopping smoking tobacco. During these events, FFAAIR also welcomed participants to its information stand and invited people to take a lung function test. 

UK National Stop Snoring Week 23–27 April, 2018

National Stop Snoring Week is the annual event in the UK promoting general awareness that nobody need suffer as a result of snoring: it is a condition that can be treated.

This year the campaign focuses on how new technology can help the nation stop snoring. The British Snoring and Sleep Apnoea Association is currently conducting a UK-wide survey into how phone apps can be used as the starting point to achieve a peaceful night’s sleep.

Find out more about National Stop Snoring Week.

Take the survey.

Quiz to support sarcoidosis research

To celebrate Sarcoidosis Awareness Month this April, SarcoidosisUK is organising a special national quiz to raise awareness and funds for research into a cure.

Quizzes will take place throughout the month in pubs and community centres across the UK, from Perth to Plymouth. Each quiz has been organised by the dedicated volunteers who run the SarcoidosisUK support groups. They encourage everyone in the UK to find a quiz in their area, and to come and join the fun!

Find out more about the quiz and buy tickets.

Pulmonary Hypertension Association Europe: proud winner of the 2018 EURORDIS Best Patient Organisation Award

Four Pulmonay Hypertension Association (PHA) Europe representatives, including President Hans-Dieter Kulla, were in Brussels for the Rare Diseases Europe (EURORDIS) gala dinner and awards ceremony on 20 February. Hall Skaara, project manager for PHA Europe’s White Spots initiative, which won the award, was on stage to collect the prize on behalf of the European pulmonary hypertension community.

“Receiving the EURORDIS award is a huge honour and an unprecedented acknowledgement of 15 years of hard work for the European pulmonary hypertension community; supporting and empowering our members and advocating for better access to treatment and to organ transplant. But it means so much more to us than this; it provides us with new energy and fresh motivation to do more and do better. It empowers us to speak even louder so that our voice will carry to the countries where rare diseases are currently ignored. We extend our warmest thanks to EURORDIS for this special accolade and its trust in our work. And a heartfelt thanks to our President, Board, staff, member associations, volunteers, friends, supporters, industry partners and all those who have made this success possible.”

Global Allergy Asthma Patient Platform develops guidelines for atopic dermatitis

On 22 March 2018, Global Allergy Asthma Patient Platform hosted an International Atopic Dermatitis Nurse meeting to begin writing guidelines to outline the role of nurses in treatment of this condition.

Advances in Allergy and Asthma Webinar series

The US Allergy and Asthma Network hosted a webinar on 22 March 2018 to discuss shared decision-making in immunotherapy. The session focused on two important aspects: new vs traditional options for therapy and how clinicians can develop an optimal shared decision making discussion with patients.

If you missed the webinar, you can still access it via the website and register for upcoming sessions.

Read more.

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