NORBS - National Organization for Rare Diseases of Serbia

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3 years ago


I became aware of the existence of these diseases only when my nephew Luka fell ill with one of them. Luka has a deficiency of tyrosine hydroxylase, a rare neurometabolic disease characterized primarily by movement disorders, unstable blood pressure, variations in body temperature and abnormal eye movements.

This is what Luka looked like a year ago when he was finally diagnosed. He was 2.5 years old at the time, he could neither sit on his own nor could he perform some movements willingly.

Fortunately, there is a therapy for Luka's illness. Thanks primarily to the NORBIS organization, he was able to see the right doctors and start receiving rhe appropriate therapy.

https://drive.google.com/file/d/1TqMKJnz2RKZJaFYkdAHjV-dA4C_Q8TZ2/view?usp=sharing


Today, Luka is a boy who walks independently, a curious and cheerful child who can finally explore the world around him. Of course, there is still a long way to go before he recovers completely, but the results of the therapy are more than obvious.

These are pictures of what Luka looks today.. If you click on the link under the pictures, you will be able to see a video of Luka walking to get to his dad who is waiting for him with his arms opened.

Of course, I have the permission of his parents to publish these pictures and the video, in order to raise awareness about this issue.

There are still many who, like Luka, suffer from diseases that aren't very well-known. To raise awareness, I'll tell you something about rare diseases.

Rare diseases.

A rare disease is classified as any disease that affects up to 1 in 2,000 people.

According to the estimates of the

European Commission estimates that 6% to 8% of the population suffers from a rare disease. We also use in estimate in Serbia.

In Serbia, it is estimated that about half a million citizens live with a rare disease.

The most important characteristics of rare diseases:

-80% of rare diseases are of genetic origin; they often occur due to infections, allergies, the influence of the factors found in the surrounding environment or are generations and proliferative.

-In 50% of people with rare diseases, the first symptoms of the disease appear at birth or in early childhood.

-30% of children with rare diseases live less than 5 years.

-There is no registered therapy for more than 95% of rare diseases.

-The most common consequence of rare diseases is permanent disability.

Despite their differences, people with rare diseases and their families face the same number of difficulties that arise from rarity:

-Unavailability of diagnosis or years of searching for a diagnosis

-Lack of information: about the disease itself, where to get help for it, including the lack of qualified specialists

-Lack of scientific research, lack of medication and appropriate medical aids

-The high costs of existing drugs and treatments that lead to family poverty and reduced access to treatment

-Social consequences: stigmatization, isolation, discrimination, lack of professional opportunities

-Lack of quality health care: exclusion from health care, even when the correct diagnosis is made

-Inequality: encountering administrative barriers in trying to treat or exercise social protection rights

What is NORBIS?

The National Organization for Rare Diseases of Serbia - NORBS was founded on July 23, 2010, as an association of associations that deal with issues people with rare diseases and their family members face.

The main goal of the National Organization for Rare Diseases of Serbia is to improve this population's position and quality of life.

Objectives of NORBIS:

-unified representation of the interests of persons with rare diseases and persons with disabilities resulting from a rare disease in Serbia and unified appearance before decision makers and other actors in society;

-protection and realization of basic human rights, elimination of discrimination and realization of equality, equality and social inclusion of persons with rare diseases and persons with disabilities caused by a rare disease;

-commitment to decision makers in Serbia to accept and apply international and European standards, principles and documents in the field of rare diseases, in order to provide persons with rare diseases and persons with disabilities resulting from rare diseases the highest possible quality of life;

-advocating for the adoption and implementation of national policy in the field of rare diseases and the reform of national legislation in accordance with the needs and interests of persons with rare diseases and persons with disabilities resulting from rare diseases;

- providing, through national policies and legislation, special support to families whose members are persons with rare diseases and persons with disabilities resulting from a rare disease.

NORBS is a member of the European Organization for Rare Diseases - EURORDIS

An online regional conference on rare diseases was held yesterday and today. With this article, I wanted to contribute at least a little to a better understanding of this problem. Look up the NORBIS Facebook page, find out a little more about them, build awareness of the existence of these diseases, and of course help somehow if you can.

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Comments

Nice and informative. Thanks for sharing this

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3 years ago

All this means a lot to me privately and I wanted as many people as possible to get acquainted with this issue.

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3 years ago

Good health to the young fighter

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3 years ago

Thank you, all those children are great fighters and real heroes.

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3 years ago

Today, full of problems, we do not have time to dedicate to the appeal for sick children. It is wonderful that there is this organization that helps.

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3 years ago

The organization was founded by parents of children with rare diseases, but was later joined by many humane people.

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3 years ago

great post dear...I know girl with rare disease too....I wish Luka a lot of health,happiness,....

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3 years ago

I am glad that you liked the article and thank you for your kind wishes. I wanted to introduce this problem to as many people as possible.

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3 years ago

I wish a lot of health to the little hero.

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3 years ago

Thanks, he's really a little hero.

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3 years ago

When it comes to diseases like this, people usually have a habit of turning their heads. It is definitely wonderful that there are organizations that fight to give every child a chance to heal.

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3 years ago

I totally agree with you. It is wonderful that there is an organization that also helps people suffering from rare diseases.

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3 years ago

Awesome article, thanks dear for knowing us this Rare disease. Even i don't know about that

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3 years ago

As I said in the article, I became aware of their existence only when my sister fell ill with one of them. I believe that as many people as possible need to be made aware of this problem.

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3 years ago

Yes its good and you are right here

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3 years ago