Patient organisation round-up: March 2017

Here is a summary of some of the activities patient organisations in Europe have been carrying out over the last month.

Picture: The Association “Pulmonary hypertension patients assistance”, Belarus’ blue lips campaign

European expert recommendations on Alpha-1

A European expert group including national Alpha-1 patient organisation representatives and healthcare professionals have, together with the support of Alpha-1 Global, produced expert recommendations for people across Europe affected by this rare condition.

The recommendations are for policymakers, healthcare professionals and individuals and carers, and the document was launched at an event in the European Parliament on 22 March.

Read the document.

New website on flying with oxygen

The European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) has launched a new website for people with lung conditions who need oxygen therapy and want to travel.

The new EFA website, “Steps to take to fly with medical oxygen”, is a tool for patients looking for information about how to arrange a trip by plane when they need oxygen on board.

Read more.

European Patients’ Rights Day 2017

The Active Citizenship Network will celebrate the 11th European Patients’ Rights Day with a multi-stakeholder conference, to be held on 10 May 2017 in Brussels.

The aim of the conference is to discuss, inform and suggest new approaches to the existing European and national medicines regulatory systems, for better management of access to innovation. Access to innovative therapies strongly contributes to the quality of life of patients and the quality of healthcare services provided, respecting the fundamental values recognised by the European Charter of Patients’ Rights. The event will be an occasion to inform, discuss and take commitments to improve the respect of patients’ rights and their involvement in the policymaking and regulatory processes at national and European level. 

Read more.

Spanish patient organisations deliver training to parents and children with asthma and bronchiolitis

Parents, children, carers and teachers are invited to attend a workshop on 3 April 2017 in Madrid, Spain to find out more about childhood asthma and bronchiolitis. Delivered by Dr Javier Contreras, in collaboration with patient organisations Asma Madrid and the National Federation of Patients with Allergies and Respiratory Diseases (Fenaer), participants will have the chance to learn more about the diagnosis and treatment of asthma and bronchiolitis.

For more information and to register, please email:

The new newsletter by Asmamadadrid in Spain is also available on their website.

Blue Lips for pulmonary arterial hypertension

The Association “Pulmonary hypertension patients assistance”, Belarus organised a campaign with the theme of blue lips to raise awareness of pulmonary arterial hypertension from 26 February – 16 March in Minsk.

There were a number of photo sessions with professional makeup artists who put blue makeup on people’s lips and a flash mob was organised. The images were a huge success on social media. 

Watch the video.

“COPD, Exercise and Me”

COPD Support Ireland recently piloted their community-based exercise class “COPD, Exercise and Me” as an affordable way for people with COPD to exercise. This was so successful that there are now 15 sites running the programme. It is a 12 week assessed programme based on pulmonary rehabilitation exercises.

After doing pulmonary rehabilitation, many people find it challenging to continue the exercises on their own and this programme offers them the opportunity to continue in the company of other people living with COPD. It becomes more than just an exercise class, as people get to socialise and plan other activities together. The results have been amazing, with every person seeing an improvement in their overall health.

Read more.

Rare diseases event in Wales

Tuesday 14 February saw the first of three annual Rare Disease Day receptions for the Primary Ciliary Dyskinesia (PCD) Family Support Group, UK at the Senedd in Cardiff, the Welsh Assembly. More than 100 patients, family members, clinicians, academics, patient representatives and industry joined Assembly Members for the event. Lucy Dixon, who has PCD, represented the PCD Family Support Group and you can read her blog about the event.

Read more

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