From Peter Strahl, HAE Hungary

Rare Day 2025 – Budapest Semmelweis University February 22, 2025

The aim of Hungarian Rare Day is to increase awareness of rare diseases among decision-makers, healthcare professionals, and society. Information is the key to improving the living conditions of people with rare diseases.

Raising awareness is, therefore, one of our primary goals, because:

  • Action taken simultaneously in many places and countries can ensure that the voices of rare patients are heard by as many people as possible.
  • A day focused on rare diseases can bring hope and information to people living with rare diseases, their caregivers, and families.
  • We want European rare patients to have equal access to care and treatment.
  • We need action that unites all stakeholders in rare diseases for common goals.
  • Research and the care system require greater financial support, and we need more research and greater efforts for the benefit of rare patients.
  • We need coordinated political action programs at national and international levels.

On the occasion of Rare Disease Week and World Day, the Association of People with Rare and Congenital Disorders (RIROSZ), with its 61 member organizations, including the Hungarian HAE, organized the “Rare Day” for the 18th time this year on Saturday, February 22, 2025, in the Semmelweis University building in Budapest.

The program aims to create a forum where the relevant interest groups can jointly discuss the situation and plans of people living with rare diseases.

Several of our fellow patients represented our organization at the event. Among our interested parties were other patients suffering from rare diseases, pharmaceutical company representatives, health consultants, and family doctors. We tried to give a comprehensive picture of what surrounds us in relation to HAE from both the patient’s and doctor’s perspectives.

We agreed with other colleagues suffering from rare diseases and representatives of patient organizations that involving our fellow patients in daily work, and raising awareness of other fellow patients who may need help and more information, are the most difficult tasks at the moment.