Kava s rijetkima – Rijetki encefalitisi
Encefalitis je upala mozga u čijoj pozadini mogu stajati razni uzroci, a najčešće su posljedica infekcija ili autoimunosti. Pod rijetkim encefalitisima obično ubrajamo one uzrokovane nekim virusima, gljivicama, parazitima i tumorima. Katkada se uzročnik nikada ne pronađe. Encefalitis može dovesti do promjena u ponašanju, konfuzije,…
Održano predavanje o refluksu i primjeni omeprazola kod djece
Predavanje u organizaciji Hrvatskog saveza za rijetke bolesti, namijenjeno roditeljima djece s gastroezofagealnim refluksom i ostalim zainteresiranima, uspješno je održano 5. veljače 2026. u Kaptol Boutique Centru u Zagrebu. Sudionici su imali priliku poslušati izuzetno zanimljivo i edukativno izlaganje dr. Lane Omerze, pedijatra-gastroenterologa iz KBC-a…
Kava s rijetkima – Fenilketonuria (PKU)
Definicija Rijedak urođeni poremećaj metabolizma aminokiselina karakteriziran povišenom razinom fenilalanina u krvi te sniženom razinom ili potpunim nedostatkom enzima fenilalanin-hidroksilaze. Ako se ne otkrije rano ili se ne liječi, poremećaj se očituje blagim do teškim intelektualnim oštećenjem. Epidemiologija Prevalencija fenilketonurije (PKU) pokazuje znatne geografske razlike….
Kava s rijetkima – Spinalne mišićne atrofije (SMA)
Definicija bolesti Skupina neuromuskularnih poremećaja koju karakterizira progresivna mišićna slabost nastala zbog degeneracije i gubitka donjih motoričkih neurona u kralježničnoj moždini i jezgrama moždanog debla. EpidemiologijaPrevalencija se procjenjuje na oko 1/30 000. Klinički opisDefinirana su četiri podtipa prema dobi početka i težini bolesti: tip 1…
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 ...
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