PlayDecide sessions take off!

  Useful links:
Rare Disorders Denmark
Harvinaiset
Rare Diseases National Alliance
HUFERDIS
ECSITE
www.Play Decide.eu
Play Decide Facebook group
Read more:
POLKA
"Patient empowerment can be fun!"

Empowering rare disease patients and capturing their input

“The new PlayDecide website is launched! With many innovative features, it will become a vital tool to spread the topics and centralise the results” says Anna Kole, Public Health Manager at EURORDIS. “It is very user-friendly and some of our members have already started taking full advantage of its new features”.

In Denmark, the rare disease national alliance used PlayDecide to raise awareness about rare diseases and the issues surrounding them, amongst industry and politicians.

In February, representatives from Rare Disorders Denmark met with members of the pharmaceutical industry to discuss orphan drug policy, with the help of the PlayDecide discussion tool on the orphan drug cost. The debate produced a pleasant consensus!

HUFERDIS in an awareness raising series

The Hungarian National Alliance (HUFERDIS) has started a series of 6 PlayDecide workshops, on each of the rare disease subjects, to train moderators and to encourage participants to reproduce the experience within their circles of activity.

“The idea is to introduce them to the format and then encourage them to participate with others. Workshops are free, the organiser only asks that each attendee organise one session per subject”, explains Beata Boncz of HUFERDIS.

The kick off session took place at the end of March with 20 participants (patients, patient representatives, researchers and students from the Faculty of Special Education of the Eötvös Loránd University) discussing the stem cell version of the series. Amongst the participants was a patient who had undergone stem cell therapy himself. He volunteered to create PlayDecide discussion materials inspired by his own life experiences.

HUFERDIS are recipients of a microFUND, which is a small grant specifically designed to organise activities around PlayDecide from Polka partner Ecsite. “This grant will allow us to organise PlayDecide with our members on a larger scale by training volunteers to organise sessions with people who may not be aware of HUFERDIS or of rare diseases,” says Beata Boncz.

Incentives that give results

Those patient groups who organise the greatest proportion of sessions in relation to the size of their organisation will be given additional incentives such as prefabricated discussion packs or the opportunity to organise a PlayDecide event in a museum or support to create discussion packs for additional topics. Award recipients will be decided by the POLKA steering committee at two intervals during the project in 2010 and 2011.

The results from these sessions and all others will be displayed on the new PlayDecide website. The website enables users to download topics and upload results into a common database where visitors to the site can view them. In addition the results will serve EURORDIS, within the Polka project, to communicate on the preferred health policy of the rare disease community.

The recently revamped open source web platform includes the following new features: ability to modify and create new topics; translate topics into your local language; announce events online; share an inspiring story; get support from others by joining the Facebook group.

More examples of PlayDecide sessions:

Denmark: the rare disease national alliance used PlayDecide to raise awareness about rare diseases and the issues surrounding them, amongst industry and politicians. In February, representatives from Rare Disorders Denmark met with members of the pharmaceutical industry to discuss orphan drug policy, with the help of the PlayDecide discussion tool on the orphan drug cost. The debate produced a pleasant consensus!

Finland: the Association of People with Physical Disabilities (Harvinaiset) used PlayDecide to raise awareness amongst the general public on Rare Disease Day at the Finnish Science Museum Heureka. The museum proved to be a fun and accommodating place to organise PlayDecide sessions under the auspices of the Minister of Health and Social Services.

Romania: the Rare Diseases National Alliance organised a session of PlayDecide with staff members, volunteers and medical students on the topic of neonatal screening. “Everyone had something to gain”, argues Dorica Dan, President of the Romanian National Alliance (RONARD). “PlayDecide made our team members more aware of the ethical and moral … knowing that the results will be updated on the website made them believe that their opinion is important and they have a say in this issue.”


This article was first published in the June 2010 issue of the EURORDIS newsletter


Author: Anna Kole & Paloma Tejada
Photo credits: © 2010 Sylvain Gouraud/EURORDIS

Page created: 24/05/2010
Page last updated: 28/07/2011
 
 
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