World Hereditary Angioedema Awareness Day
World Hereditary Angioedema Awareness Day (HAE Day) is observed on May 16th to raise awareness about this rare, hereditary disease. The goal is to promote timely diagnosis, better treatment, and support for those affected. Hereditary angioedema (HAE) is a rare genetic disorder that causes recurring episodes of swelling (angioedema) ...
World Lupus Awareness Day
Today, May 10th, we observe World Lupus Awareness Day, a day dedicated to raising awareness about lupus, an autoimmune disease that affects millions of people around the world. Lupus is a chronic autoimmune disease in which the immune system attacks the body’s own tissues and organs, causing inflammation and damage to the skin, joints, kidneys, heart, lungs, and brain.
New Therapy for Duchenne Muscular Dystrophy
The Committee for Medicinal Products for Human Use (CHMP) of the European Medicines Agency (EMA) has issued a positive opinion recommending the conditional marketing authorization of givinostat for the treatment of ambulant patients aged six years and older with Duchenne muscular dystrophy (DMD).
Ehlers-Danlos Syndrome Awareness Month
May is dedicated to raising awareness about Ehlers-Danlos Syndromes (EDS), a group of rare genetic connective tissue disorders. The goal is to inform the public, support those affected, encourage understanding, and highlight the importance of early diagnosis and appropriate medical care. Ehlers-Danlos Syndrome encompasses a group of inherited disorders that affect the connective tissues,
Rare Disease Awareness Month
In May, we observe days dedicated to the following diagnoses: Moyamoya syndrome, osteogenesis imperfecta, Ehlers-Danlos syndrome, lupus, Cornelia de Lange syndrome, mucopolysaccharidoses, tuberous sclerosis, hereditary angioedema, and neurofibromatosis. May is an opportunity for all of us to raise awareness of these rare diagnoses and to show support for those who live with them...
World Hemophilia Day
World Hemophilia Day is observed on April 17 in honor of the birthday of Frank Schnabel, a person with hemophilia and the founder of the World Federation of Hemophilia. Hemophilia is a disorder characterized by a reduced ability of the blood to clot. It is most commonly inherited, with the gene typically passed from mother to child.
International Pompe Disease Day
International Pompe Disease Day is observed each year on April 15, with the aim of raising public awareness about Pompe disease, a rare inherited genetic disorder. Pompe disease is an autosomal recessive metabolic disorder caused by mutations in the gene responsible for the enzyme acid alpha-glucosidase (GAA).
Sarcoidosis Awareness Month
April is Sarcoidosis Awareness Month Sarcoidosis is a rare inflammatory disease characterized by the formation of granulomas—clusters of immune cells—in various organs, most commonly the lungs, lymph nodes, skin, and eyes. The exact cause remains unknown, though it is believed to result from an overactive immune response to environmental or genetic factors.
International Multiple Myeloma Day
The last Thursday in March, which also marks the awareness month for this disease, is observed as Multiple Myeloma Awareness Day. The goal of this observance is to raise awareness about this condition, emphasize the importance of early detection, and enable timely and quality treatment for all affected individuals.Multiple myeloma (MM) is a severe, incurable disease
Rare Disease Day 2025 - #HugsForRare
Marking of Rare Disease Day 2025 was organized under the patronage of the City of Zagreb, in co-organization with the City Office for Social Protection, Health, Veterans, and Persons with Disabilities, and under the patronage of the Ministry of Health of the Republic of Croatia.
Mapping of Clinical Trials Centers
A new clinical trials map is now available on the public website of the Clinical Trials Information System (CTIS).The map is designed to provide patients and healthcare professionals with easy access to comprehensive real-time information about clinical trials being conducted in their area, thereby increasing potential access to clinical research across the EU.
6th Student Conference on Rare Diseases
Simultaneously with the observance of International Rare Disease Day at Cvjetni Square, the 6th Student Symposium on Rare Diseases was opened at the University of Zagreb's School of Medicine. The event was organized by the Students' Section for Rare Diseases in collaboration with the Croatian Alliance for Rare Diseases.
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