NoRo-Frambu EN

  • Project: NoRo-Frambu, partnership for future

     

     

     

     

    Project financed through the SEE 2009-2014 grants, within the NGO Fund in Romania.
    The content of this website does not necessarily represent the official position of the SEE 2009-2014 grants. The responsibility for the correctness and coherence of the information presented lies wholly with the website initiator.
     
    For official information regarding the SEE and Norwegian grants, access www.eeagrants.org.
  • Lisen Julie Mohr (Frambu Center) talking about the collaboration with NoRo Center

    Liste to what Lisen Julie Mohr - Frambu Center - said

  • Information and consultancy visits at general social assistance departments in various counties on rare diseases

    During the 14 months of the project we initiated collaboration with general social assistance departments in different development region (one service in each region) to inform about the services which NoRo Center can provide for people with disabilities produced by rare diseases and to seek ways of collaboration for their orientation to needed specialized social services.

    These visits are a win-win approach: on the one hand, we promote and inform about the center's services, we provide information about rare diseases and find out what problems these institutions face when encountering difficult cases of rare diseases. On the other hand, we want to provide support in their work, trying to identify social services that could integrate patients with rare diseases, giving them information, and training. Information visits in Satu Mare, Alba Iulia, Craiova, Bucharest, Constanta, Timisoara, Pitești, Botoșani. The participants of these meetings were representatives of local or county authorities, providers of medical, social services, and representatives of patient’s organizations – actors involved in the management of rare diseases.

    On the meetings were raised different issues faced by the people affected by rare diseases:

    • lack of services in rural areas and that patients are not interested in statistics and costs of services, they must have access to the services they need;
    • the role of communication and collaboration between patient organizations, that signalsthe needs faced by patients and specialized service providers, policy makers and local community authorities which must develop support tools for people in need;
    • specific problems of people affected by rare diseases and different possibilities for collaboration between those present. Discussions were focused on the importance of centers of expertise, stressing that the Order on the organization, functioning and methodology of the certification on centers of expertise for rare diseases, has been approved, good news for all those interested in the problem of rare diseases.

    To improve access to specialized social services for people with disabilities caused by rare diseases in Romania, it was popularized the work of NoRo Center and its development objectives after the Norwegian model – Frambu Center.

  • Parents’ impressions about the summer camps

    For both children and parents this week was relaxing with a lot of fun activities. We thank to the volunteers who helped us, they really got involved and participated with our children in all of the organized activities.

    Words are not enough to thank those from the NoRo Center, that we had the opportunity to take part in a camp organized so nice.

    Apetrea Rodica, Andrei's mother

     

    This week we felt very good, it was nice, the children had a lot of freedom, many enjoyable activities. I had the opportunity to communicate with parents of other children, with whom I shared interesting experiences.

    For children was a good opportunity to socialize and interact with other children, to play anything else beside the daily routine activities.

    Giurgiu Raluca, Ianis’s mother

     

    We had a very beautiful week and we felt wonderful. We are thankful for the accommodation, food and the NoRo team, who take care not to miss anything.

    For us this week was one of relaxation, I interacted with many parents, have had many enjoyable activities.

    Goia Simona, Sorin’s mother

  • Rare People and Rare Diseases

    Download here Rare People and Rare Diseases

  • Dear and innocent little people

    Impressions of a volunteer

    There comes a time in every person’s life when we feel the need to do more than a small donation or to help an old woman cross the street. For me, this desire determined me to enroll in a post-secondary school, to specialize in the noble profession of balneo-physio-kinetic-therapy. However, fate decided it is time for a deeper involvement, at that time an unknown zone, in the world of the good people and wonderful children from Romanian Prader Willi Association, who unfortunately need our help. Therefore, I started volunteering, that I will never finish doing.

    In the summer of 2015, I got involved in "NoRo - Frambu partnership for future" project and in the summer camps organized by NoRo Center. With the summer sun above us, parents, children, professionals and volunteers, thrilled but smiling, we began our activities. The first day is always special, gathers unspoken questions, curious looks, stories told who knows how many times, in addition necessary to create links between us. Each volunteer received the responsibility to handle one of the children, but without ignoring general needs, other participants present. The camp involves a place where large groups of different personalities come to socialize, cooperate, and carry out activities together, and all of this requires mutual trust. We have tried to become a united group and play for these dear and innocent little people, parents ... and because we knew that, it is possible!

    The greatest satisfaction as a volunteer, in activities such as camp, is when you see the smile of contentment appeared on the faces of parents and children involved in inspiring activities in a new environment, but safe, thanks to you and others like you. When you hear his mother exclaiming: "he drew notes on the staff? he drew so beautiful?" or when taking his small hand firmly, feel that his going to fall and by preventing that, you know that you are the reason why is not hurt. Moreover, you understand that you reach his soul, when in his free time wants to stay with you, or when, gone for a minute after the material, seeks you until he finds you.

    Maybe at first I did not understand all the implications and benefits of participation of all children, parents and volunteers in a camp, but after I saw the change. I have seen parents who come to the Day Care Center with children that talk to each other, which never happened before, I saw children who recognize each other on the hallways or react positively to one another during ergo therapy. In addition, I saw that they recognize us and respond warmly to us, volunteers.

    Beyond the story, there are needs, concerns, and fears. Beyond the story, there is a cruel reality, of the children with special needs. Beyond all this, there’s us the humans. Taken separately we not always manage to gather the necessary strength to face the current day, but as a community, child-parent-therapist-volunteer we are a force, we force fate and bring back the childhood where seems to be missing. Being a volunteer means to be part of the community that means a lot. Moreover, this feeling is priceless.

    Sârbu Sebastian Dușan, volunteer

  • Summer camps

    Frambu Center organizes camps to provide holiday experience, learning opportunities, and activities in a safe environment, with the purpose that these gained experiences to be used in leisure time and everyday life to overcome the challenges they face.

    For participants the main objective is often to know other people in the same situation as themselves, to share experiences and socialize. Each camp has 2 camp leaders, 2 leaders of activity, 5 group leaders, about 45 untrained assistants, a medical student and nurse.

    Frambu’s staff stays in the background of camp life as much as possible, offering advice and counseling to the camp staff.

    405 applicants for the job as camp assistant: 30% new applicants and 70% with camp experience. Mostly, young students. 380 applications for participating in total, relatively evenly distributed throughout the four camps. One of Frambu’s staff is responsible for the process of employing staff.

    Perspectives for participants: learn to cope with different situations, acquiring independent life skills and overcome obstacles, take part in fun activities, possibility of integration, homesick, memories for life.

    Participants are children, youths, and young adults with rare disorders, without parents, local caregivers, or assistants. 75% of these having Frambu as their competence service centre. The rest are from other Norwegian competence services. During summer are organized 4 camps, 50 participants (12 - 16 years,16 - 30 years, 14 - 20 years), 30 participants (18 years and up).

    Through many years of organizing summer camps, Frambu has developed a certain ʺcamp cultureʺ, which is passed on from one year to another.

    We try to preserve this camp culture by finding the appropriate balance of experienced and new camp workers and participants. This experience assists greatly in assimilation to camp life and culture.

    As far as possible, the camps are left in the hands of the responsible, devoted young workers – youth working with youth.

    Starting from this model, through the "NoRo Frambu - Partnership for Future" project we propose to organize summer camps for children from the NoRo Day Care Center and youth from "Independent Living Skills" programme.

    To increase socialization among children and young people with disabilities caused by rare diseases and autism spectrum disorder during the period 27 July – 14 August 2015 we organized 3 camps. The first NoRo camp was held during 27 - 31 of July 2015, the second camp was held in 3 - 7 of August 2015 and the last camp took place in 10 - 14 of august 2015. Location Pension "Piece of heaven". In the three camps, we had 152 people (an average of 50 people per group): 45 beneficiaries and 107 attendants (family members, personal assistants), volunteers and the NoRo team. Volunteers during activities offered help and support to children or young people who faced difficulties in completing tasks. Meanwhile parents attended the activities and only where it was the case they intervened occasionally.

    During the 5 days, we conducted various fun and enthusiastic activities for kids. This camp was an opportunity for parents to interact among themselves, to know each other better, to make friends, share experiences and find solutions to the difficulties they face in everyday life. Such experience has enabled parents to relax and enjoy a moment of respite. This respite was facilitated not only by the conditions in the camp but also by the help of volunteers. Volunteers have an important role in this camp, primarily because during activities each worked one on one with the child, which they received at the beginning of camp. The role of "shadow" of volunteers facilitated stimulation and management of activities. Children and young people involved in activities benefited from a different kind of therapy in order to acquire social skills, to develop language, to acquire skills of personal autonomy. Outdoor activities in a new environment helped children in the process of adapting to new situations.

    Darko Hortensia Emese, special education teacher RPWA

     

     

  • Bilateral Workshop II - Integrated care for persons with complex disabilities produced by RD using Norwegian model

    During 20-21 of November 2015 in Zalau, was held the second bilateral workshop under the "NoRo – Frambu, Partnership for the Future" project - "Integrated care for persons with complex disabilities produced by RD, using Norwegian model".

    The topic: Innovation in services for patients with RDs to ensure the continuity of care

    The workshop was attended by a total of 53 people, of which 2 participants were from Norway partners. The workshop was held during two days. On the first day, the NoRo Center was visited which was followed by the plenary session. The Norwegian ambassador in Romania Mrs. Tove Bruvik Westberg and representatives of national and local authorities held the opening address speech.

    The topics of the workshop:

    • The story of a partnership: NoRo – Frambu (video presentation);
    • Joint Presentation: NoRo – Frambu partnership for the future;
    • Organizing care for patients with rare diseases in Norway (Norwegian model in rare diseases – Norwegian Consultative Unit for Rare Diseases);
    • Collaboration between stakeholders only solution for rare diseases;
    • The importance of training providers for people with diseases;
    • Funding of social services from the authorities.

    On the second day were outlined as key concepts: rare diseases, integrated care, centers of expertise, European reference networks, and case studies. It is crucial to refocus medical care to integrated care for rare diseases, centers of expertise and European reference networks. In addition is very important to take into account the recommendations on quality criteria for centers of expertise for rare diseases. These recommendations help in the development process or policy making on national strategies and plans for rare diseases.

    The presentations included:

    • Case studies on best practice examples, the Rheumatology Clinic of Cluj-Napoca was presented;
    • camps for people with rare diseases in Norway and Romania;
    • accreditation and licensing of social services;
    • RARE Project Connect.

    It was made a parallel between the camps organized in the summer by the Frambu Center and camps organized by NoRo Center. The conclusion was that these camps were a success among people affected by rare diseases. Sharing experiences by Frambu Center was a first step, which helped organize and conduct the NoRo camps.

    Providing holistic services for rare disease patients may represent a number of challenges for patients due to obstacles created by the complexity of the disease, lack of treatment and the rarity of disease. In such situations integrated care aims to improve the quality of care especially when patients have no treatment. Accreditation and licensing of social services provides the ability to easily access specialized social services.

    At the end of the workshop was highlighted the importance of collaboration among specialists, patients, therapists or other stakeholders to raise awareness of the needs of patients affected by rare diseases and to support them in trying to find more efficient solutions.

    Almasi Zsuzsa, manager assistant

  • Bilateral Workshop I - Integrated care for persons with complex disabilities produced by RD using Norwegian model

    The purpose of organizing the workshop (28 to 29 April 2015) is to strengthen bilateral relations NoRo – Frambu  and share experience in approaching rare diseases in Norway, finding solutions for adaptation the NoRo Center activities using the Frambu model. Given that, the workshop was held in late April, we gave a great deal of time on the debate on organizing the first summer camps for beneficiaries from NoRo Center. On behalf of Frambu participated Karsten Barton, Lisen Mohr and Simen Aabo, representatives from RPWA, other social, medical service providers, colaborators of the NoRo Center and representatives of local authorities. It was made a presentation about the project goal and objectives, how the activities were designed to achieve our objectives.

    The workshop was attended by 53 people, including 3 participants from Norway partners.

    The workshop was held during two days.

    The first day after the introduction and presentation of the participants, the workshop was opened with thanksgiving to the partner representatives and authorities present at the event. Collaborating with everyone present that makes possible the development of NoRo services and the improvement of quality of life of persons with rare disease.  The project "NoRo – Frambu   partnership for the future", was presented through which the event was organized.

    The topics of the workshop were:

    • Why we consider the NoRo – Frambu partnership sustainable;
    • The Norwegian model;
    • Services of Frambu Center;
    • Why is integrated care important for patients with rare diseases.

    It was studied the possibility of implementation of the Norwegian model, with the specific necessary adjustments of the NoRo Center. It was also presented the structure of activities for people with rare diseases from Frambu Center, including the structure of activities, interventions and personnel, budget and insurance required.

    On the second day, starting from the presentation ʺPatient’s pathway in social servicesʺ, discussions focused on the needs of people affected by rare diseases and on how to make better use of community resources, networks, and exchange of best practices. There were several open discussions, than in the first day to give the possibility to participants to find out details regarding the activity of Norwegians. Discussions included the purpose and structure of the camps organized by Frambu Center, justifying their necessity. The purpose of these camps, beside offering enjoyable moments is to strengthen children/young people affected by the disease to develop support groups, to be appreciated and encouraged in what they do, to develop their personality and socialization skills in order to have a better life. However, it is important that the camp activities to be social activities, and not actual therapy activities.

    Almasi Zsuzsa, manager assistant

  • NoRo – The story of a project – Background for NoRo-Frambu

    It’s interesting to tell the story of a project that is very close connected to your life project… It is certain that our approach to others is more because of sharing the same thoughts and less about the way of living. We made friends not because they corresponded to a mental standard, but because they responded positively to a set of questions considered relevant to follow up a friendship. We did not even ask if they want to be our friends. We talked with them, we met, we shared the pain and joy, and so we tied our lives together. It was the same when we got to the conclusion that we could really do this, here with this center in Zalau, with the support of the Norwegian partners. Not because of some theoretical principles, not because someone or some institution has declared their support, but because this project created the same enthusiasm and belief in us and in partners. To believe in something does not mean you always are convinced by an amount of information, and sometimes I’d say that we even ignore part of the information to keep the dream alive…

    Only if you follow your dream, you can reach it! It is a very interesting feeling to analyze how it happened and which facts concurred to the achievements you had in your life. As a person that never believed in having any kind of ʺleadershipʺ skills, I think that now I am doing a pretty good job for the team that we have created in this project…

    But, let’s start with the beginning! My daughter was diagnosed with Prader Willi Syndrome when she was almost 18 years old and we wanted that nobody else to face an unknown diagnose any more. As a result of the struggling to find information about the diagnose and to trace other families having member with this diagnose I created the Romanian Prader Willi Association – RPWA in May 2003.

    In 2004 I’ve been attending my first international conference on Prader Willi Syndrome in New Zealand. It was a ʺlife experienceʺ, going at the end of the world to learn how to cope with my daughter’s disease. It was my first trip by plane, my first contact with parents from all over the world facing the same problem as I do. It was not easy getting there. First it was a matter of money that I solved by a grant that I received through the German association for PWS. Then, when this problem was solved, I realized that I needed a visa from London, as we had no Embassy in our country… and to get this visa, I needed a visa for England, too. Very complicated. I couldn’t solve it without a good friend in Cambridge that helped me make this dream a reality.

    The travel was not easy at all, as I went by car to Frankfurt, slept in the car and the next evening I took the plane for more than 30 hours. It was a real adventure…In New Zealand I met wonderful people that helped me think that I can really do the mission that I assumed to do for Romanian patients. I met Ragnhild Arnesen from the Prader Willi Association Norway, I met Pam Eisen the head of the International Prader-Willi Syndrome Organization (IPWSO)and found out that Pam’s father was born in Felsőbánya-BaiaSprie (and I believed that it is in Hungary and then realized that it was in fact in Romania and very close to my town). I made friends and I was looking forward to meet them again at the next conference in Germany. Also, I had the opportunity to be in a workshop chaired by a special person, Christian Aashamar from Frambu – Resource Center for Rare Diseases, Norway. His presentation about Frambu kept my attention and remained as a dream for me because it seemed something impossible to be done in our reality. Nothing is happening in your life by mistake. But things began to develop rapidly. The German association decided not to host the following conference and in a ʺcrazyʺ moment I decided that we can do it… and we did it in 2007! The conference included 388 participants from38 countries, including Norway and we managed to organize the arrangements to everybody’s satisfaction! As from that moment we were more self-confident in our organizational capacity.

     Also, in the same year we had established the Romanian National Alliance for Rare Diseases, we started to work for the National Plan for Rare Diseases and organized2 conferences for rare diseases. I would say that it was the major step forward for our organization. In the same year I have been elected in the board of IPWSO and EURORDIS (The European Organization for Rare Diseases).In 2008, a call for proposals from Norway Grants was opened and I remembered the presentation about Frambu from New Zealand (sometimes you keep something in your heart and you don’t even realize that it is still there) and I decided to try. I approached PWA Norway and asked for partnership for the seed money project and they agreed to prepare the project and to ask Frambu for partnership. Everything became possible because of two mothers, one from Norway and one from Romania that have met once in New Zealand… and when we lose our strength we are carried by hope…We have prepared a partnership agreement and a presentation of the project and met at Frambu in November2008. At that time, all the information on Frambu’s website was in Norwegian language, so I based my application on the memories and my own dream. To be honest, I’ve been most impressed by the way Frambu approaches the entire family and community to improve the quality of life for the person affected by rare diseases. This is why the RPWA’s vision was the ʺNorwegian realityʺ so to say…I don’t know why and when we convinced them to be our partners (after the first day, I told to dr. Puiu that they will not accept to be our partners…), but, I assume there were some important elements: Ragnhild Arnesen from PWA Norway, the vision and my belief that we can do it in a very different reality as Romania. The director of Frambu saw this and signed the agreement the next day. We wrote the project and we won it. The implementation of the project was not easy as we wanted to achieve as much as possible for a better future for patients with rare diseases in Romania. But, the expertise of our partners was essential, the team and volunteers involved (Lisen, Tove, David, Kaja, Ragnhild, David Oziel, Christel, Anja, Nina, Rob, Romanian professionals and patients involved in the National Committee for Rare Diseases) were outstanding and the entire support from additional partners and friends helped us to do a good project.

    The experience of our partners was essential in our project!

    Project NoRo – "Norwegian - Romanian partnership for progress in rare diseases" has offered RPWA the opportunity to develop the services that we created through the Center for Information on Rare Genetic Diseases that we established in 2005. The eUniversity is developed as a service in the actual center for information and the Pilot Reference Center is a separate building created during the project implementation.

    The construction of the center

    That was another story with lots of challenges and efforts. First, we received the land through a partnership agreement from the Catholic Church ʺSt. Familyʺ Zalau. Then it was given back to the Local Council, who decided to give it to the RPWA (in accordance with the will of the church) to renovate and build the center for rare diseases, initially for 1 year, than 3 and finally for 10 years.

    Through this project we built TRUST and UNDERSTANDING…We started with delays in the construction work due to the procurement methods and contestations, than we had floods, landslides, supplementary work for reinforcement of the land and many others... but, we overcome all these and succeeded in the end. Mainly because all the people involved constructor, architect, authorities, staff and volunteers, all of them transformed this project in their main goal and all wanting this project to be an example... I would say that our belief became their belief, and this is fantastic. This project is important for rare diseases patients as it is valuing the everyday experience of patients and families. One of our main purposes is to implement training activities for the entire family and for the professionals involved in diagnosis and management of the rare diseases. Also, it will offer an important support to all the patients, not only to those who have an effective treatment but also for those who have no treatment for the moment (through therapies, training, counseling and support group activities).Through this project we did not build only a ʺcenterʺ for rare diseases, but we built real partnership and trust among all the partners involved. The involvement of Frambu and PWA Norway is a model for the Romanian partners and this cooperation has influenced the support of the national authorities, too.

    ʺIf you fight for your dream, one day, the dream will fight for you, too….ʺ

    Dorica Dan, president of RPWA