February 28 marks Rare Disease Day. Sandra Ivanauskienė, founder and Head of the Special Purpose Medicines Division at “Norameda”, shares her thoughts.
“Rare diseases have only gained global attention in recent decades, although they have accompanied humanity for just as long as any other health condition.
In Lithuania, Rare Disease Day was first commemorated on February 29, 2008. It is a ‘rare day’ that occurs only once every four years. Therefore, we are only celebrating the 15th Rare Disease Day, and we can be proud that within such a short period, the development and progress in rare disease treatment have been truly remarkable.
Some rare diseases can be successfully treated, but even when treatment has not yet been developed, early diagnosis allows timely measures to be taken to relieve symptoms, prevent disease progression, and avoid complications, thereby improving the quality of life of both the patient and their family,” says S. Ivanauskienė.
Only 5% of rare diseases have an approved treatment. Moreover, only a small proportion of medicines intended for the treatment of rare and ultra-rare diseases are included in the list of reimbursable medicines.
“We are pleased to be part of this process and are doing everything we can to help this number grow,” says the Head of the Division.
Today, virtual networks across all European countries connect more than 900 leading European reference centers in over 300 hospitals. More than 700,000 patients with rare and complex diseases are treated within these networks every year. Lithuania is successfully participating in the EU reference network system, and rare disease competence centers are being established in our country’s university hospitals.
“One of the company’s goals is to involve our physicians in the international community as much as possible, where they can not only learn from one another’s experience, but also share their own expertise and thus contribute to the creation and advancement of progress in rare disease treatment.
This allows us to feel a strong sense of purpose and mission in our work,” concludes S. Ivanauskienė.
