R.P.W.A - Romanian Prada Willi Association
The Romanian Prader Willi Association (RPWA) represent patients with Prader Willi Syndrome and other rare diseases (disabilities) in Romania and support their families.
It was established in May 2003 to bring together the efforts of patients, specialists and families to ensure a better life for all people with disabilities. They also try to enlighten both the general public; media and health system to ensure those with disabilities receive support and correct diagnosis.
The opening of its Information for Rare Genetic Diseases in 2005 was the first of its type in Romania and the work they have achieved is amazing. Last year they secured a substantial grant from a Norwegian charity to build a large National Centre in Zalau to expand and enhance the work they are already doing.
As part of this project they needed to raise 20,000 Euro from other sources and partners and, to that end, ROAD was pleased to be able to contribute £12,000 to support the commencement of the project. We are always amazed by what Dorica and Tibi Dan achieve with great determination. They are totally committed to giving a voice to those with disabilities and to support their families, particularly with correct diagnosis. We will continue to support them when we are able and as they continue their work.
Dorica & Tibi Dan
Anyone who has met Dorica and Tibi Dan will understand exactly what we mean when we say we are amazed at their drive, enthusiasm and ability to get things done. Dorica and Tibi are firstly parents to Oana and Alex. Oana has Prader Willi Syndrome and is now in her twenties. It had taken many years for Dorica to achieve the correct diagnosis for her and this is the drive that makes her want to ensure any other child in Romania receives a correct diagnosis for their rare disease.
We first met Dorica when she first involved with the disability centre and trying to set up the Romanian Prader Willi Association. She had heard about ROAD and turned up at Ioan & Otilia Ciupe’s apartment to see if there was anything we could do to help her.
She initiated RPWA (Romanian Prader Willi Association) in 2003 and established RONARD (Romanian National Alliance for Rare Diseases) through a project funded by CEE Trust in 2007. She has taken part in the opening of the first Centre for Information about Rare Genetic Diseases in Romania and initiated the National Plan for Rare Diseases in Romania.
She is a board member of EURORDIS and IPWSO - International Prader Willi Syndrome Organization since 2007, and currently she is also an advisor to EUROPLAN, an EU Commission-funded initiative to establish national plans for Rare Diseases throughout the EU’s Member States.
Dorica is the Chair of Romanian Prader Willi Association, Romania (RPWA); President of the Romanian National Alliance for Rare Diseases(RONARD) and Coordinator of the Center for Information about Rare Genetic Diseases. Tibi is a Traffic Police Officer and spends the rest of his time organising and overseeing the building work of all the projects for ROAD and Dorica! We count both as good friends of ROAD.