Norwegian-Romanian (NoRo) Parternership for Progress in Rare Diseases

Our priorities are the forming of a work relationship with a Norwegian partner and the cooperative development of a proposal plan for improving the quality of life for individuals affected by rare diseases in Romania. The proposal plan will focus on addressing both the relevant needs of patients with rare diseases (equal access to early diagnosis, quality treatment and rehabilitation services) and the development of a training network for staff and professionals who provide services to these patients. Additionally, we aim to establish a hub to connect those with rare disease that have been suffering in isolation and with lack of resources for too long. 

With the conclusion of the seed money project, the partners will be prepared to submit a comprehensive proposal to Norway Grants and Innovation Norway. The proposal will include a plan for the dissemination of information and skills to rare diseases stakeholders (doctors, specialists, families and patients) through trainings as well as the preparation of an interdisciplinary committee to address the needs of patients with rare diseases in accordance with the National Plan for Rare Diseases and the Romanian Ministry of Health. This proposal will also provide for the creation of a rare disease rehabilitation center which focusing on therapeutic, psychological and social services for rare disease patients and their families.

ACTIVITIES:

1. Initiate a cooperative partnership with an experienced Norwegian organization already established in the field of rare diseases. We have already been in contact with the Landsforeningen for Prader-Willi Syndrome and will be in contact with the FRAMBU Center for Rare Disorders in regards to a potential partnership. This partnership will function as an information exchange between the two countries through shared resources and training events in order to better serve the populations of individuals inflicted with rare disease in each respective area.

2. Contact potential partners, beneficiaries and professionals with experience in the field of rare diseases in Romania. Create a database of these stakeholders and invite them to attend a workshop to assess the needs of patients with rare disease in Romania.

3. After the database and assessment workshop is completed, create a skilled project proposal team which will determine the strategy plan for the development of trainings tailored to the needs of each stakeholder group. This team will create both a face-to-face training curriculum for staff, parents and patients and plan an online e-learning program with the goal of professional accreditation. These goals will fit within the framework set forth by the Romanian Ministry of Health in the recently signed National Plan for Rare Diseases. The National Plan includes mandates for new services and opportunities for patients with rare diseases.

4. Research models of rare disease rehabilitation centers in Norway and the rest of the world and, with the assistance of specialized consultants in the field, provide a comprehensive study of necessary staff, equipment and other resources required to create an environment catered to the needs of various prominent rare diseases (autism, et al.). We will then seek out an appropriate building and a qualified architect to prepare the necessary technical documents for facilities to fit these needs.

5. Create both financial and narrative reports of our progress under the seed money program and prepare a final submittal for the partnership proposal under the Norway Grants program. This partnership proposal will initiate the e-learning programs, training programs and rehabilitation center prepared for by the seed money.