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.
Hugs For Rare - Rare Disease Day Campaign
Join us for the special campaign 'Hug for Rare' that we are organizing for International Rare Disease Day on February 28! This campaign aims to raise public awareness about the challenges that people living with rare diseases and their families face every day. Rare diseases are often invisible ...
Program of the 6th Student Conference on Rare Diseases
The Students' Section for Rare Diseases at the Faculty of Medicine in Zagreb, in collaboration with the Croatian Alliance for Rare Diseases, invites all interested students to the 6th Student Conference on Rare Diseases, titled "ZEBRA 2025." This year's conference will focus on rare metabolic diseases, and the preliminary program of the event is provided below.
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