Meeting of the Rare Disease Task Force to update the National Plan for Rare Diseases – 18-19 september 2009

Posted: September 23, 2009 by mihaiela in Evenimente APWR, FRAMBU, NoRo, Parteneri, Rare Disease Task Force
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Members RDTF
Representatives from APWR
Representatives from Frambu, Norwegian Prader Willi Association

Meeting Agenda:
-Presentation of the NoRo project, Norwegian-Romanian Partnership for Progress in Rare Diseases
-Presentation of activities of Frambu Center and the Norwegian Prader Willi Association
-National Plan for Rare Diseases Presentation of Romania versus European Commission recommendations
-Working Group: discussion and redrafting the National Plan for Rare Diseases Romania
-Recommendations of Norwegian partners

Dorica Dan made a summary of the Pilot Center for Rare Diseases and Virtual Training Center E-University as the audience is different from yesterday and people are not updated with these information. The Pilot Reference Center will allow those affected by rare diseases access to personalized intervention and will include a residential component (meetings and lectures for patients and families to learn ways to cope with the disease in daily life) and a day center part (therapy and specific intervention for children with autism, behavioral therapy, occupational and educational therapies, recreational activities, sports groups and counseling activities).

At this stage of the project the following elements have been completed: the technical project for the reference center, the structured platform for e-University, launch of the Rare Diseases and Rare People magazine and the Rare Disease Journal for professionals.

The virtual training center e-University will be hosted at and contribute to training and information about rare diseases.

Partners in this project are: Prader Willi Association Romania,  Prader Willi Association Norway, Center for Rare Diseases FRAMBU Norway, Ministry of Health of Romania, the Greek Catholic Church “Holy Family” Zalau, Acasa Foundation, Zalau City Hall, Salaj County Council, University of Medicine and Pharmacy “Victor Babes” Timisoara, Romanian National Alliance for Rare Diseases.

Until now we had the official opening of the project in April in Timişoara with the participation of the partners and we had the first meeting of the National Committee for Rare Diseases in Cluj-Napoca.

We edited three editions of the magazine “Oameni rari si Bolile Rare” Rare People and Rare Diseases

We finalized the technical project for the Pilot Reference Center.

For doctors we edited one edition of the “Jurnalul Bolilor Rare”. Rare Disease Journal

Dorica Dan stressed that the partners are good examples in developing services for RD.

Our work in Zalau will include a day center addressed to children on the autistic spectrum and a residential part, where organized groups with RD will be trained in how to cope with their disease, after 3 weeks of rehabilitation activities in ACASA Foundation.

The first group was with MS, they had a nice experience, they established new connections, become a strong support group for each other.

Recommendations and Advice from Norwegian Partners

Support for the work, but the board should have nutritionists and physiotherapists.

  • Gather people with the same rare diseases and prepare them for training courses. Stress the importance of multidisciplinary cooperation between the different professionals and the persons concerned, both outside and inside.
  • The cooperation with Acasa Foundation Hospital is important for the multidisciplinary approach. It is important to bring patients from Acasa to the Pilot Reference Center for training.
  • The trainings at the Pilot Reference Center should also include the families around the family member with the rare condition.
  • It is important for the professionals to share experiences between each other.
  • It is important to provide training for the professionals.
  • E-University portion of the project is recognized as a critical component. They are starting the eUniversity project in Norway as well.
  • It remains important to share information through the web site.

Day center components of Pilot Reference Center

Questions to be considered: What age groups? What activities? Is there a limit on how long can a person be involved in the activities?

Need to set limits in order to have other individuals involved. The criteria for acceptance in the center will have to change in time, as more and more patients find out and needs the service.

The partners from Norway reported the following on their visit to Romania:
• an overall positive assessment of the project, considering it necessary and appropriate for patients with rare diseases in Romania
• appreciate how the social and medical functions are aligned more in the future center for rare diseases
• technical design and architectural solution have been assessed as representing a harmonious combination between new and old, approaching in a friendly a socio-medical and educational complex
• considered e-learning and e-University for rare diseases as an innovative idea

Following participation in Eurordis meetings, Dorica Dan synthesized Commission recommendations on updating the National Plan for Rare Diseases in Romania.  The working group members agreed on the following RDTF necessary changes in the scope and objectives of the National Plan for Rare Diseases Romania. Such order will become “Raising the quality of life of people with rare diseases,” and the main objectives:

I. Development of institutional framework
II. Developing services for diagnosis, treatment, rehabilitation and prevention in the field of rare diseases
III. Improving access to information on rare diseases
IV. Create a national register of rare diseases
V. Human resources development
VI. Stimulating research in rare diseases
VII. Enhancing the role of patients

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