News

Meeting with the European Association of rare diseases EURORDIS

2012-03-19

On 18.03.11. representatives of EURORDIS with the help of MOTUS VITA organized a meeting in Riga. Participated: EURORDIS Health Policy Director Francois Houyez and his assistant Kasia Peala, members of MOTUS VITA and Caladrius (Rare disease association) as well as local health professionals and a representative from our Ministry of Health.

In the first half of the meeting Mr.Houyez told about EURORDIS activities and co-operation with EU health commissions. He described the support EURORDIS can provide to initiatives from our health associations. After the speech of the Ministry of Health rep, it turned out that our Ministry of Health has been working on a health care improvement plan that they are going to submit to the EU health commission in autumn. However, EURORDIS highlighted the importance of the plan to be worked out together with patients organizations. A representative from Stradina Clinics initiated to organize an all Latvian Health Conference with participation of some foreign guests. EURORDIS supported this idea and offered assistance in some guests’ invitation. EURORDIS also thinks that the health care improvement plan has to include the key ideas from this conference. The first half of the meeting concluded with brief presentations of Caladrius and MOTUS VITA associations.

The second half of the meeting was dedicated to Polka Play-Decide game (www.playdecide.eu). It is used to organize debate games about issues important to rare disease patients. To play the game all the local participants were divided into 2 teams, each of the team had to debate and make conclusions on one of the topics: Cross border health care and Neonatal screening. In the end Mr.Houyez summed up the results of the discussion in teams and sent them to the Amsterdam office – the opinion of Latvian patients and health professionals will be taken into consideration. EURORDIS left 3 game kits and since the texts and instructions are in Latvian they can be used for similar game sessions in patients summer camps.

In his final speech Mr.Houyez answered questions and revealed future EU projects. One of them called National contact point to be implemented within 2 years attracted the audience’s attention. It’s essence is that in any EU country there should be a contact point that would explain to a patient available treatment in other EU countries. EURORDIS believes that patient input into the development of rare disease strategies currently developed at the European and national level is of utmost importance. One of its main missions is to empower patients and representatives in becoming advocates for important rare disease policy in their countries of living.

EURORDIS can offer different support, but to receive it Latvian patients must organize themselves in one national association and learn to advocate their rights.

back