New website, new chapter – almost a year of URS
June 17, 2026
Shortly before our first birthday on June 29, 2026,
For people with ultra rare sarcomas.
For research.
For hope.
For life.
Ultra rare sarcomas are among the least researched cancers worldwide. We raise awareness and advocate for more knowledge, better therapies, and real prospects for the future.
Ultra Rare Sarcoma e. V. is a non-profit patient association based in Munich Germany. We are here for you, as a point of contact for people with sarcomas and their families, regardless of the subtype.
We support you with easily understandable information, personal networking, and the connection to suitable contacts. Our special focus is on very rare sarcomas, which affect fewer than one person per million per year. These patients are often overlooked in research, care, and public awareness.
We support projects on very rare sarcomas because without research, no new therapies can be developed.
We connect those affected and their relatives so that no one is left alone with their diagnosis.
Affected individuals and their relatives make up at least half of our board.
You're not alone.
Sarcomas account for only about 1% of all cancers. Within these rare tumors, there are over 100 subtypes; many of them affect only a small number of people worldwide.
More than half of all sarcoma types are considered very rare: less than 1 case per 1 million people per year. They are poorly researched, often without established therapies, and cause great uncertainty for those affected.
Few specialized treatment centers, little reliable information, hardly any clinical studies. Many patients are left alone.
ALL CANCER DISEASES WORLDWIDE
around 1% of all cancer cases.
< 1 case per 1 million people/year
Shortly before our first birthday on June 29, 2026,
We, Ultra Rare Sarcoma e.V, are committed to making a difference.