Documentary on Rare Diseases “Day by Day”

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Day by day, produced as a project of the Croatian Alliance for Rare Diseases, the umbrella organization for rare diseases in Croatia, is the first documentary on rare diseases. It was made in cooperation with the Croatian Film Association, an association of non-professional film and video groups.

This documentary was developed in order to raise public awareness and that of all persons involved in the care for patients with rare diseases that the patients are not “some people somewhere” and that they need help to break free from the margins of society. Sometimes all that is needed to include patients in the everyday life of society and to help them live a better life is just a little bit of effort. As well as the social problem, the movie presents the difficulties in receiving adequate medical care and expensive therapies and raises the question of the patient’s position in the health system.

The movie presents real-life stories of people living with rare diseases and their family members, how they cope with medical and social problems in their everyday life, how society accepts them and how the diseases affect the quality of their lives.

Comments

Brendan Kloos says:

This needs to be translated to English.

GuerinGrad09 says:

These ppl need to wake up. No one with type I diabetes (they said it was a pediatric rehab center so that means children, who mostly have type 1 diabetes, not type 2) should have to live anywhere but in regular society. Parts of Europe especially Russia don't understand that we aren't handicapped. Type I diabetics, along with many other diseases, are invisible among the normal population among societies in most 1st world countries because we take our illness, learn to live with it and don't let us stop it from being a normal person. Sure there things we have to do to take care of ourselves that people without diseases don't have to do, but other than that we literally lead a normal life.

Proud Zionist says:

Leo is such a sweet young man. I would totally be his girlfriend.

pebs cove says:

how abt next time you make this in '''''''English hmm'''''''

Hannah Mullen says:

What language is this in?

Neurotic says:

The two women early on in the video, definitely Scleroderma.

Rijetke Bolesti says:

Dear all, the diagnoses were not mentioned on purpose. We wanted to present the problems that are common for the whole RD community nad to highlight just a few diseases. Dear Kesaiserris9, you guessed PKU, EB and Hemophilia.

kesaiserris9 says:

My guesses
PKU was the man talking about the amino acids in his diet
Epidermolysis bullosa was the little baby with the blisters that his mom was sticking with a needle
Primordial Dwarfism was the very tiny boy
Hemophilia was the boy riding the bike
Less sure
Omen Syndrome the small boy with immune deficiency issues that his mom wanted to keep away from animals
Hirschsprung Disease- the older man with the bowel issues
PCD the boy with congested lungs in the swimming pool (?)

Now I have forgotten some of the cases and will have to look again. They don't really give much to go on in the interviews, if they told you what they had then you could find out more

Rene Markgraf says:

would be nice to know what each patient has been diagnosed with.

Feemailgamer says:

ahhhh whos been diagnosed with what

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