Kava s rijetkima – Kompleksni regionalni bolni sindrom
Osobe s kompleksnim regionalnim bolnim sindromom (CRPS), rijetkim, ali izrazito izazovnim i često neprepoznatim stanjem, osjećaju bol koja traje tjednima, mjesecima, a ponekad i godinama, koja nije proporcionalna ozljedi i koja ne nestaje uz standardne terapije. Radi se o neurološko-upalnom poremećaju u kojem živčani sustav…
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,…
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.
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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