Annual Activity Report 2010 Romanian Prader Willi Association ...

was to update the NoRo project, the National
Plan for Rare Diseases and preparation for the
Europlan Conference.
We presented the results to the eUniversity
team visit to Norway - University of Tromso.
It was an important experience, beneficial to
the future development of the project.
Methods of completing the questionnaires
for assessing the quality of life of patients
affected by rare diseases were analyzed, in
order to have a substantial number of subjects
for an interim evaluation and presentation of
partial results at the Europlan Conference.
Patient groups at ACASA
Foundation
May-June 2010, Zalau
In May 2010, a group of 10 patients was
hosted at Acasa Foundation - 8 adults with
multiple sclerosis and two children with Prader
Willi syndrome and Wilson´s disease. In early
June 2010 another group was welcomed - 8
patients - 5 adults with MS and three children
with phenylketonuria, Down syndrome and
Angelman syndrome.
Daily, specialists – a psychologist and a social
worker -from the RPWA team met with
patients in support groups and individually,
organising individual therapy sessions, socioeducational
and leisure activities. One of the
wishes of the group was that at next return
they would like to see the same people in the
group (if possible), because of the friendships
they made and which are a real support both
during and after the hospitalization.
Support group for parents
June 29, 2010, Zalău
The third meeting of the support group for
parents whose children participate in the
activities of personalized therapy took place
Tuesday, 29th of June 2010. The meeting was
focused on the theme: “The announcement of
the child´s diagnosis”, and was attended by
seven parents and two moderators (a social
worker and a psychologist).
We used a personal approach of the topic
introduced at the beginning of the meeting,
each parent sharing their experience about
finding out the diagnosis of their child was,
difficulties in accepting the disability and in
finding solutions for the recovery and treatment
to be followed.
Parents have shared information and listened
to each other and gave advice to those who
are at the beginning of the journey dealing
with their child’s disease.
Trip to Aghires and horseback
riding
July 6, 2010, Aghireş
On the morning of July 6th, a lively group consisting
of children who attend behavioural therapy,
their parents and siblings, and RPWA personnel
enjoyed a trip to the Aghires Equity Club.
Horse riding is not only a sport but also a therapy
combining movement (development of motion
skills, tonification of muscles, and improvement
of posture) and relaxation with love for animals,
sensory and verbal communication with the
animal. If development of motion skills is a
long term process, relaxation, love for animals
and the wish to communicate with them can
be instantly noticed.
While the children were exploring the surroundings,
petting and feeding the ponies and riding
horses with the help of instructor, parents
had the opportunity to share experiences and
emotions, to internalize new ways of solving
problems based on positive experiences of
others.
Annual Activity Report 2010 | Romanian Prader Willi Association 21