Annual Activity Report 2010 Romanian Prader Willi Association ...

Advisory Committee eUniversity
(Noro)
February 25, 2010, Bucharest
Monitoring visit of the project
“Norwegian-Romanian Partnership
for Progress in rare diseases”
March 18, 2010, Zalau
Project supervisors Anne Lise Rognlidalen
and Randi Alkem Andresen came to Zalau,
to discuss the implementation stage of the
project “Norwegian-Romanian Partnership for
Progress in rare diseases” the potential risks,
opportunities for prevention and sustainability.
On February 25 we held a meeting of the
Advisory Committee for eUniversity. After the
January meeting held in Oradea on the same
subject, we determined the needs related to
this service. At this meeting with Mr. David
Oziel – EURORDIS and Orphanet consultant we
wanted to define the structure and analyze
the administrative component of this new
educational system.
Live appearance on TVR 1 -
News and Theme of the Day
February 26, 2010
On the evening of February 26, 2010 in “Theme
of the Day” program on TVR1, rare diseases
were presented, starting from the story of Maria
who died at the end of the year 2009 due to
too late diagnosis of Prader Willi Syndrome and
complications from the disease. “She was a
child until the age of 28, when she took off to
heaven. But it was a miracle that she remained
this long among the people. We are talking
about Maria, who could have had a chance for
a better life if the doctors would have made
the correct diagnosis in childhood: no one knew
she had a rare disease until it was too late.“ On
the “Theme of the Day” the situation of rare
diseases in our country was discussed. Dorica
Dan, president of the National Alliance for Rare
Diseases, and Dr. Razvan Chivu counsellor of
Minister of Health on health programs were
present in the studio.
The conclusions related to the results of the
monitoring visit were very positive.
Support group for parents
March 24, 2010, Zalau
Wednesday, 24.03.2010 the first meeting
of the support group was held for parents
whose children participate in personalized
therapy. Although the number of participants
was small, they were delighted about the
initiative of RPWA professionals to give them
the opportunity to share to each other the
experiences regarding their special children.
The meeting was moderated by a social worker
and a psychologist. The discussions were
directed to talk about the children of those
present. Each parent was encouraged to talk
about events in the life of the child, sharing
both pleasant and unpleasant experiences. Thus,
they were able to open their hearts, to feel
understood, being in similar situations, to learn
from each other and to receive psychological
support and the support of others.
18 Annual Activity Report 2010 | Romanian Prader Willi Association