Novo izmjenjeno izdanje priručnika za medicinske djelatnike
Objavljeno je novo, izmijenjeno izdanje priručnika za medicinske djelatnike o rijetkim bolestima ubsklopu edukativne platforme Rijetka Infoteka. Priručnik je namijenjen liječnicima, medicinskim sestrama, studentima zdravstvenih studija te drugim zdravstvenim stručnjacima koji u svom radudolazeu kontakt s pacijentima s rijetkim bolestima.Novo izdanje donosi ažurirane stručne informacije,…
Seamless Transition: Support Models and Policies for Rare Diseases
Introducing our new project “Seamless Transition: Support Models and Policies for Rare Diseases.” This initiative focuses on improving the journey of young people with rare diseases as they move from paediatric care to adult healthcare services.
Kava s rijetkima – održana edukacija za volontere
U sklopu projekta „Kava s rijetkima“, financiranog sredstvima Grada Zagreba, 3. prosinca 2025. u prostoru KBC-a Zagreb održana je edukacija volontera Studentske sekcije za rijetke bolesti. Kroz edukaciju, volonteri su upoznati s radom na liniji pomoći Hrvatskog saveza za rijetke bolesti (HSRB) te s…
Together Against Health Misinformation
The Croatian Alliance for Rare Diseases has joined the “Dangerous to Your Health” campaign, led by Faktograf, with the goal of raising awareness about the harmful impact of health misinformation. False or misleading health claims can be dangerous — they may delay treatment, lead to poor decisions, or undermine trust in medical professionals.
Complex Regional Pain Syndrome (CRPS) Awareness Day
Today we mark CRPS/RSD Awareness Day — a global event held every year on the first Monday of November to promote awareness of Complex Regional Pain Syndrome (CRPS / RSD). Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD) ...
30th Croatian Symposium of Persons with Disabilities with International Participation
The 30th Croatian Symposium of Persons with Disabilities with International Participation, held under the theme “UN Convention on the Rights of Persons with Disabilities – Nothing About Us Without Us – From Slogan to Reality,” took place on October 29 and 30, 2025, at the University of Zagreb.
International Epidermolysis Bullosa Awareness Week
October 25 marks Epidermolysis Bullosa (EB) Day, which also launches International Epidermolysis Bullosa Awareness Week (October 25–31, 2025). Epidermolysis bullosa is a very rare and severe genetic condition that causes extreme fragility of the skin and mucous membranes. Those affected are often referred to as “butterfly children” because even the gentlest touch can cause painful wounds ...
HeMED – A Reliable Source of Medical Information
Croatian Electronic Medical Education (HeMED) is an online platform that provides everyone with free access to professional and verified medical information — clearly presented, easy to understand, and in the Croatian language. Patients often look for information about their illness or therapy from unreliable sources. HeMED offers them a safe and simple way to…
New brochure presented for the project “Safe Network: Supporting the Mental Health of Young People”
As part of the project “Safe Network: Supporting the Mental Health of Young People”, which aims to strengthen the mental health of young people through direct work (education and workshops) with youth, their parents, and students in helping professions, a brochure on youth mental health has been created.
International Gaucher Disease Day
World Gaucher Disease Day is observed every year on October 1st. On this day, patients, families, healthcare professionals, researchers, associations, and industry partners come together to raise awareness about this rare disease across the globe. In 2025, the International Gaucher Alliance (IGA) ...
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