Patient organisation round-up, November 2015

Here are some of the highlights of what patient organisations across Europe and beyond have been doing during the past month.

Picture: a day trip for children with asthma, organised by Anemona in Bosnia and Herzegovina.

It’s Alpha-1 Awareness month

Alpha-1 Global is raising awareness of the condition during Alpha-1 Awareness month, which gives “alphas” around the world the opportunity to increase knowledge and awareness about Alpha-1 in their communities. Alpha-1 Canada is providing a “Random Acts of Awareness” suggestion list and the Alpha-1 Foundation is offering a list of awareness month tools.

Read more (in English). 

Travelling with oxygen in Europe

Following the launch of their leaflet, Steps for passengers flying with medical oxygen, at the ERS International Congress in September, EFA kicked off their “Oxygen Ask” campaign for World COPD Day with an update of their booklet on travelling with oxygen in Europe.

Read more (in English). 

National patient register for rare diseases

The Romanian National Alliance for Rare Diseases launched their national patient register for rare diseases in Bucharest at the end of October. The event was attended by 34 representatives of different stakeholders, including the Ministry of Health.

So far, 297 patients and 39 different rare diseases have registered. It is hoped that the data that can be taken from the register will impact on therapeutic interventions at the NoRo treatment centre.

Read more (in Romanian).

New agreement between Lovexair and Spanish pharmacies

Lovexair have just signed an agreement with the Seville College of Pharmacists to collaborate on a strategic plan. The plan will provide better awareness, support and education for people with lung conditions, through their pharmacy outlets and digital resources.

The first steps will be to set up some initial training for pharmacists in key support areas with the collaboration of two members of the Lovexair advisory board.

Read more (in Spanish).

Children on day trip to memorial

A group of 45 children with asthma went on a day trip to a local memorial in order to enjoy the fresh air and the countryside. The trip was organised by Anemona in Bosnia and Herzegovina.

Read more (in Bosnian).

Workshop for children with asthma in Spain

EDUCASMA, in collaboration with the Spanish patient organisation association FENAER, organised a workshop for children with asthma and their parents to learn how to prevent emergency hospital admissions.

Read more (in Spanish).

Respiralia organises workshop on hygiene in Portugal

The Balearic Association of Cystic Fibrosis (CF) organised a “Workshop of hygienic measures in CF” on Friday 23 October. Families from Menorca were able to update their knowledge on cleaning and sterilising equipment needed to manage CF at home.

In addition, a review of basic hygienic measures was made so they can be applied at home, at work and outside, reinforcing the idea that frequent and proper handwashing helps prevent up to 95% of infections.

 Read more (in English)

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