Representatives from APWR
Representatives from Frambu
PRONET Architect – design services provider

Meeting Agenda:
– Project presentation
– Presentation of architectural and structural solutions for the Pilot Reference Center for Rare Diseases Zalau
– Presentation of e-University and the proposed structure for the website http://www.edubolirare.ro
– Discussion on social services, social health and education to be provided by the project
– Exchange of best practices, presentations on the FRAMBU center and from Prader Willi Association Norway

Alexander Strimbu (Pronet) presented the architectural and construction plans for the Rare Diseases Center into three sections: part written, part video and presentations highlighting the various sections. The solution designed includes an old building (heritage building to be preserved and restored, and a new wing that will be built as an extension on to the old building.
Wing „A” will contain the main functions:
Basement: technical functions: laundry / dryer / ironing, small repair workshop, central heating, civil protection shelter, and personnel and storage areas.
Ground floor: public interface:
welcoming area – reception, waiting room, medical room, counseling office, meeting room for support groups, restrooms and dependences.
Attic: accommodation area:
5 rooms with two beds, 1 room with 1 bed, bathrooms, and kitchen area.
Wing „B” will contain the main functions:
Ground floor: basic function for the program:
classroom, physical therapy room, pool, locker areas, bathrooms, equipment annex and storage area.
First Floor: management offices, day center spaces, related functions:
administrative offices, rooms for: sensory therapy, behavior therapy, speech therapy, dining hall, storage and annex spaces.
The exterior is organized into two areas:
The first enclosure for access to buildings and supply
Backyard premises – space for the activities of “outdoor”, “unfinished” garden for therapy purposes, playgrounds, observatory pavilion. This area is also a communication channel with the Greek Catholic Church, a partner of the Center.
All proposed spaces have accessible facilities for people with disabilities.
The presentation included detailed functions and destinations for each area and focusing on versatility / multifunctionality of areas.

Dorica Dan and Camelia Arion presented the concept of E-University and how the platform will be structured for online training and information for rare diseases.
The virtual training center, or e-Univerity, will be hosted at http://www.edubolirare.ro.
The profile of potential clients of the E-University was discussed. Quality standards in the field of training are to be considered when developing training curricula as well as in the ways of running the theoretical and practical elements of the training program.

Norwegian partners presented a brief history of the center Frambu, structure and organization of its services, how to access the services, projects in progress. They used various audio, video and graphic presentations in support of those presentations.

FRAMBU Center has over 50 years experience in the field of rare diseases and the main services provided by them are:

  • Courses over 5 days for families of patients with rare diseases (those diagnosed attending with parents, husbands, wives, close friends, children or in some cases even grandparents or others who are in close relationship with the individual). In those 5 days, they carry on counseling session, exchange information and experiences, active discussion groups on specific topics of interest to participants,  consultation sessions, reading sessions on documents relevant to the disease, etc.. An important aspect of these meetings relates to the fact that people affected by rare diseases can meet other people with same problems, which have the capacity to understand and share positive experiences. Personal contacts made at FRAMBU are appreciated by the beneficiaries and noted as very important.
  • Research projects for rare diseases
  • Information materials for rare diseases elaboration
  • Summer camps for patients with rare diseases and their families
  • Development and informational activities for local communities

FRAMBU serves as national resource center with services for 100 diagnoses. There are 16 other centers in Norway, but many of the other resource centers provide services only for a specific syndrome or disease.

  • Experts from FRAMBU had some statistics about the situation of rare diseases in Norway (approximately 30,000 people suffer from rare genetic diseases or other congenital conditions). FRAMBU provides assistance for approximately 100 different types of rare diseases.
  • Frambu Center is the only one in Norway that provides hotel-type services during the five day training.
  • Frambu also utilizes a type of helpline for information on rare diseases and a Web site with a collection of links and contacts for rare diseases http://www.rarelink.eu/.
  • Two main divisions are organized to provide services in the center (Division A and B) with specialists in the following areas: doctors, nutritionists, physiotherapists, occupational therapy educator, social educators, social workers, psychologists, nurses.
  • The day center services are provided by special educators, art and music therapists and interns.
  • Internships are a way of offering practical training and certification of skills for mid-level specialists.

Presentation by Norwegian Prader Willi Association

The principal goals of the Association are improved quality of life for people suffering from Prader Willi Syndrome and to provide services in collaboration with the FRAMBU center. The Norwegian Prader Willi Association currently conducted two research projects: oral health for patients with Prader Willi syndrome and growth hormone administration to adult patients. The Norwegian government offers material support for patients with rare diseases in the amount of 30,000 euros and provides support for municipal authorities to draw up a development plan throughout the life.

There are a number of limits on services for people with PWS in Norway:
• Special housing for people with rare diseases insufficient
• Lack of specialization carergivers
• Low importance given to dietary and exercise plans by patients

Visit to ACASA

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