My name is Daniel Krasus – and RareDiseasesLensMagic1974 was born from something very personal.
I live with the reality of rare diseases myself. I know what it feels like when you realize that hardly anyone understands what daily life truly means. When explanations are exhausting. When you feel alone despite being surrounded by many people.
It was exactly out of this feeling that this platform was created.
I wanted to create a place where people with rare diseases and their loved ones can find understanding, exchange, and visibility. A place where medical jargon doesn’t take center stage, but rather the people, their stories, and their strength.
Why Photography?
Photography has always been more than just a hobby for me.
A camera can make things visible that are difficult to put into words: feelings, challenges, dignity, courage, and personality. Through my lens, I want to show that behind every rare disease stands a human being who deserves to be seen.
RareDiseasesLensMagic1974 therefore combines two matters close to my heart:
- Life with rare diseases
- The power of images and stories
My Motivation
I launched this website because I would have wished for exactly such a place in the past.
A place with:
- Personal experience reports
- Honest insights into daily life
- Support for relatives
- Opportunities for exchange
- Understandable information about rare diseases
Today, I want to pass exactly that on.
What Matters to Me
It is important to me that no one here has to explain themselves.
That those affected realize: I am not alone.
That relatives understand: I can help, even if I cannot comprehend everything.
That visitors recognize: Rare diseases are rare – but the people behind them are not.
A Personal Project with Heart
RareDiseasesLensMagic1974 is not a medical portal or an association. It is a personal project born from experience, empathy, and the desire for visibility.
If this site contributes to even one person feeling less alone, then it has fulfilled its purpose.
Thank you for being here.