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Vigenin: For people with rare diseases, quality of life depends on early diagnosis
At a discussion in the European Parliament, the MEP called for equal access to diagnosis, treatment and specialised care for patients with primary immunodeficiencies.
“Every missed or delayed diagnosis means a missed opportunity to prevent complications and improve someone’s life,” said MEP Kristian Vigenin during a discussion in the European Parliament on improving respiratory care for people with primary immunodeficiencies.
Vigenin hosted the event, organised together with the International Patient Organisation for Primary Immunodeficiencies (IPOPI). The discussion brought together medical professionals, researchers and representatives of patient organisations, who discussed the challenges of early diagnosis, access to specialised treatment and ensuring continuous care for patients.
Respiratory complications and delayed diagnosis
In his speech, the MEP stressed that respiratory complications are among the leading causes of illness and death among people with primary immunodeficiencies. Recurrent infections can cause irreversible lung damage and seriously worsen quality of life. According to the data presented, between 70% and 90% of people with primary immunodeficiencies worldwide remain undiagnosed.
“Access to quality healthcare must never depend on a person’s income, where they live or how rare their disease is,” Vigenin stressed. He drew attention to the significant differences between member states and individual regions in access to specialists, diagnosis and appropriate treatment. In his view, the European Union can help reduce these inequalities through closer cooperation between national health systems, the exchange of medical expertise and research, and more effective use of the European Reference Networks.
Positive examples from Bulgaria
The MEP also pointed to positive examples from Bulgaria. Since March 2026, newborns in the country have had access to screening for severe combined immunodeficiency through the TREC test, which allows the most severe cases to be detected before life-threatening infections develop. Bulgaria also has a national registry of patients with primary immunodeficiencies, linked to European research efforts, and immunoglobulin replacement therapy for children and adults is covered by the National Health Insurance Fund.
The recommendations of the IPOPI White Paper
Vigenin welcomed the presentation of IPOPI’s new White Paper, developed with the participation of medical professionals, researchers and patients. The document contains specific recommendations for raising awareness among healthcare professionals and improving early diagnosis, access to treatment and long-term care for people with primary immunodeficiencies.
“As legislators, it is our responsibility to help turn these recommendations into real improvements for patients,” the MEP said. He stressed that rare diseases must receive the attention they need in European health policies and that patients must not be neglected because their condition is rare.
As a sign of support for the initiative, Vigenin signed IPOPI’s special board, which shows the journey of patients with primary immunodeficiencies through the different stages of their lives and the care needed at each of them.
“Rare diseases must never mean forgotten patients,” Kristian Vigenin concluded.
