Annual Activity Report 2010 Romanian Prader Willi Association ...

of Medical Genetics in partnership with the
Romanian Prader Willi Association, the 25th
of September was dedicated to the meeting
of the National Committee for Rare Diseases
(CNBR).
This work meeting was also joined by
specialists in Medical Genetics from Romania
and abroad, patients affected by various rare
diseases, family members and students from
“Victor Babes” University in Timisoara.
Unfortunately, discussions revealed the absence
of decision makers and family doctors – whose
presence would have been extremely important
give that they represent the interface with the
patients.
The agenda contained the following:
• A presentation of the development stage
of Orphanet Romania website – Dr. Cristina
Rusu;
• A presentation of the NoRo project and
Romanian National Plan for Rare Diseases
implementation stage – Dorica Dan, RPWA
President;
• A presentation regarding the usefulness of
telemedicine in the management of rare
diseases – Dr. Mihai Gafencu;
• A presentation of the Muscular Dystrophy
Register – R. Isabela Tudorache.
The end of the meeting focused on a debate
on “Ways to work together to improve the life
of rare disease patients” initiated by Dorica
Dan. This section allowed parents and patients
present in the room to interact with specialists
and ask for clarifications regarding resources
and alternatives at their disposal in the unfair
fight against the disease.
Meeting with the volunteers
October 5, Zalau
On October 5th 2010, the RPWA headquarters
hosted the first meeting of the Big Brother
Big Sister volunteers in 2010-2011 school year.
The meeting agenda consisted of organising
and establishing future activities in the BBBS
project.
The volunteers were presented their
volunteering contract, the job description and
the tasks and responsibilities.
Meeting of Advisory Committee
October 28, Zalau
Prior to the East European Conference on
Prader Willi Syndrome, we organised a meeting
of the Advisory Committee, attended by world
known specialists involved in managing rare
diseases.
The main purpose of the meeting was to
analyse the implementation stage of the project
“Norwegian – Romanian (NoRo) Partnership for
progress in rare diseases” and ways in which
services will be developed after finalising the
project implementation.
Annual Activity Report 2010 | Romanian Prader Willi Association 23