European Reference Networks aim to facilitate access to diagnosis and treatment for patients whose conditions require highly specialized treatment, and concentrated knowledge and resources. European Reference Networks also ensure that the service provided is of high quality, available and cost-effective. The networks focus on medical fields related to rare diseases that lack experts. The European Reference Networks serve also as information centers for medical training, research, information sharing and evaluation, helping various professionals in the EU countries and their centers to share their knowledge of the latest scientific treatments for rare diseases.
As of 1 March 2017, the first 24 European reference networks started work. In total, they bring together more than 900 highly specialized health care units in more than 300 hospitals in 26 member states. Joining the network is voluntary. From Estonia, the Tartu University Hospital belongs to the networks f rare endocrine diseases (Endo-ERN) and bone diseases (ERN BOND) and the East Tallinn Central Hospital is a member of the network of rare eye diseases (ERN EYE). The new network offers an opportunity to collaborate on a wide range of topics, from bone diseases to blood diseases, from childhood cancer to immunodeficiency. This high level know-how benefits thousands of patients every year who suffer from diseases that require a treatment that focuses on a very narrow medical specialty.
Work on rare diseases in Estonia
In 2008, Estonian Government adopted Eesti Rahvastiku Arengukava 2009-2020 (Estonian National Health Plan 2009-2020, hereafter referred to its Estonian acronym, ERTA). ERTA 2009-2020 provides recommendations and indicates the directions to be taken to improve healthcare and brings together the tasks necessary to achieve this, including for rare diseases. In Estonia, the competence in the sphere of rare diseases (diagnostics, treatment, research work) is mostly concentrated under the University of Tartu, where doctors are also trained, using the resources of the Tartu University Hospital. There is no outpatient clinic in Estonia that would fully specialize in rare diseases. There are two genetics centers, one in Tallinn and the other in Tartu, which diagnose rare diseases and where patients are referred to from all over Estonia.
Estonia does not have national registries for rare diseases and does not plan for one. In Estonia, all health-related information (including health studies, diagnosis, medication etc) is collected into the Tervise Infosüsteem (Health Information System) and the database of the Genetic Centre of Tartu University Hospital. Information on rare diseases has been available through Orphanet since 2004, and in 2011 the Estonian Orphanet team created a public portal with information on rare diseases and orphan drugs. Orphanet aims to contribute to the diagnosis of rare diseases and the treatment of patient with such diagnosis.
For example, the organization's website provides answers to the following questions: What is a rare disease? How many rare diseases are there? What are the origins and characteristics of rare diseases? Orphanet also discusses other questions about rare diseases and provides informative links to specialized clinics, patients' associations and relevant websites. The Orphanet website can be found here.
Estonia's achievements so far:
- The Tartu University Hospital meets the criteria of EUCERD (European Union Committee of Experts on Rare Diseases).
- On 12 February 2015, the Organization for European Cancer Institutes (OECI) granted the Tartu University Hospital an accreditation certificate confirming that the hospital meets the results of cancer treatment and research and is accepted as a clinical cancer center.
- The training center of the Tartu University Hospital organizes for physicians two to three trainings a year on rare diseases.
- Estonian teams have participated / are participating in FP7 projects related to rare diseases.
- A development plan for rare diseases has been prepared. You can read it here and the action plan for 2015-2017is available here.