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) ...
5th Weekend Meeting of Pediatricians and Families of Children with Hereditary Angioedema by Sara, September 30, 2025
On September 27 and 28, the 5th weekend meeting of pediatricians and families of children with hereditary angioedema (HAE) was held in Tuheljske Toplice. This gathering brought together experts and families with the aim of sharing knowledge, experiences, and mutual support.
8th National Conference on Rare Diseases
The 8th National Conference on Rare Diseases with international participation was held at Hotel Zonar in Zagreb on September 4, 2025. The event was organized by the Croatian Alliance for Rare Diseases, under the patronage of the President of the Republic of Croatia, the City of Zagreb, the Ministry of Health, and the Ministry of Social Welfare. The conference brought together patients, associations, experts, and…
World Duchenne Muscular Dystrophy Day
World Duchenne Muscular Dystrophy (DMD) Day is observed on September 7, raising awareness of this rare, genetic, and progressive disease that most commonly affects boys. The aim of this day is to highlight the importance of early diagnosis and access to therapies, provide support to families, and encourage further research and development of new...
Gastroschisis Awareness Day
Gastroschisis Awareness Day is observed every year on July 30th to raise awareness about this rare but serious congenital condition affecting newborns. Gastroschisis is a defect of the abdominal wall through which abdominal organs, most commonly the intestines—and sometimes others—protrude outside the baby's body.
Spinal Muscular Atrophy Awareness Month
August is Spinal Muscular Atrophy (SMA) Awareness Month – a time to shine a light on this group of rare but serious genetic diseases that cause the progressive loss of skeletal muscle due to degeneration of motor neurons in the spinal cord and brainstem. SMA leads to progressive muscle weakness, ...
World Scleroderma Awareness Day
World Scleroderma Awareness Day is observed on June 29 to raise awareness of this rare autoimmune disease that affects connective tissue, skin, and internal organs. The day also highlights the importance of early diagnosis, patient support, and medical research. Scleroderma, also known as systemic sclerosis, is a rare autoimmune connective tissue disease ...
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