Life with Spinal Muscular Atrophy

Starting a Family

Having a child is often said to be the most beautiful thing that can happen to a person. However, this decision is not easy for everyone. Some rare diseases are genetic, and for future parents who themselves live with a rare disease, this becomes one of the biggest decisions of their lives. 

This important topic is discussed by Prof. Dr. Sc. Ivo Barić, who, with his years of experience, strives to provide answers to all questions. And that each person, in their own way, shapes their destiny is best illustrated by the story of a brave mother and the happiest moment of her life.

The project was co-financed by the European Union from the European Social Fund

Challenges of Parenthood

These extraordinary people—super parents and super kids—live day by day in every sense of the word. From our superheroes, you can hear firsthand how they navigate a reality that is not always ready to accommodate them.

Kako se ovi hrabri ljudi bore s  birokracijom, izazovima na poslu, obiteljskim situacijama i pogledima na cesti? Razlikuje li se njihov život od života bilo koje druge obitelji i što ovi roditelji žele za svoju djecu?

Find out in the short documentary we have prepared for you as part of Rare Disease Awareness Month.

 

 

 

Life with a Rare Disease

That life with a rare diagnosis can be both joyful and challenging is something many of our members can attest to.
These incredible individuals are an endless source of inspiration and proof that a happy and fulfilling life is possible, even with a rare diagnosis. They share their stories of the strength they have found within themselves despite everything and remind us of the importance of seeing and recognizing potential in others.

 

 

 

Rare Diseases and the Job Market

The job market is challenging even if you are in perfect health, but when you have a rare diagnosis, things become even more complicated.

Two inspiring women in this documentary have experienced both good and difficult phases of their illness, yet they have turned their diagnosis into a tool to help others. Despite everything, they remain cheerful and optimistic, encouraging you to stay strong and never give up on yourself!

 

 

 

Access to Education

Every child has the right to an education! But is that truly the case for children with rare diagnoses?

In this short documentary, we explore how children with rare diseases navigate the education system.

Watch the story of our brave parents, as well as the inspiring journey of one of our members through the education system. Our mission is to ensure that all children with rare diseases are seen and recognized

 

 

 

Access to Social Services

Besides living with a rare disease, our community members face many additional challenges. Their journey takes them through countless doors—from the long path to a diagnosis to endless paperwork and rejections. The rare disease remains, but rights are not always granted. In one county, a person with a rare diagnosis may receive full support, while in a neighboring county, they may receive none at all. Although the system is more inclusive and compassionate than many others, it still fails to meet the needs of everyone.

In this documentary, we share the stories of two courageous women—one fighting for her child, the other for herself. They both know what they want: the life they deserve. Sometimes, it seems that living with a rare diagnosis is easier than fighting against inequality in the system.