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