By Jasminka, Acromegaly, North Macedonia, February 23, 2021
My rarity story is related to the difficulties in our society of researching, diagnosing, monitoring and treating patients with a rare disease. As well as in employment, social protection as a patient or categorization of the disease, as well as pension related to the disease and degree of disability. The disease with 100 faces-acromegaly- is often hidden and very often associated with physical and other, invisible condition caused by pitutary adenoma.
An appeal to international institutions, European Union countries is to be able to network research houses, institutes, clinics and all those who care for patients with rare diseases with our institutions in Northern Macedonia.
It is very important even though our country is not a member of the EU, patients with rare diseases to have access and free treatment in institutions and research centers at European level as well as contacts and mutual cooperation. Access to a database is of paramount importance!