5%
Only 5% have accessto treatment.
THINK IT DOESN’T AFFECT YOU? LET’S FIND OUT.
HOW MANY PEOPLE DO YOU KNOW?
IT COUNTS
30%
30% of children die before reachingthe age of 5.
5%
Rare diseases affect5% of the global population.
10 k
There are approximately 10,000 rare diseases.
3 m
Around 3 million people in Poland live with a rare disease.
7 yrs
That’s how long the diagnostic odyssey lasts.
Watch coverage (materials available in the Polish language only):
- Radio Białystok |Rare diseases. Nearly three ...Rare diseases. Nearly three million people in Poland live with them
- Trójka Polskie Radio |The challenge of rare diseasesThe challenge of rare diseases
- TVN24 |"It's such a non-profit ..."It's such a non-profit concern". These mothers are looking for medicines for their children
- TVP3 Białystok |Scientists in Białystok are ...Scientists in Białystok are developing therapy for children with an ultra-rare genetic disease
- TVN24 |A mother joins forces with a ...A mother joins forces with a Nobel laureate. She is looking for a drug for her son’s ultra-rare disease
- TVN24 |A race against time for ...A race against time for therapy for an ultra-rare disease. Poles took matters into their own hands
MARIA'S GOT IT
IT CAN BE TREATED
Listen to the appeal of the Nobel laureate Prof. Victor Ambros:
"Science saves lives. Science is the only hope for patients with rare diseases.There is something you can do. Advocate for research. Sign the petition."
Only 5% of patients with rare diseases have access to treatment. Their only chance lies in innovative therapies. Science saves lives.
IT BRINGS PEOPLE TOGETHER
More and more parents are refusing to accept a diagnosis as a life sentence. They won’t stand by while a single genetic typo changes their child’s future. So they act. They build research foundations, back scientists, and push for better care and breakthrough treatments. Big corporations say it’s not worth it. They’re proving it is. For their children—and for every child still waiting for a diagnosis.
JOIN THE MOVEMENT:
