Nicole Schwarzer studied history (1984-85) at the Ludwig Maximilian University in Munich, Germany, and Fundraising Management (2001-03) at the Fundraising Academy in Frankfurt, Germany. She worked in different fields; from 1989-93 for a publishing company, and from 2003-10 for the Academy for Psychotherapy of Children and Adolescents in Munich, Germany. 

After one of her children was born with an anorectal malformation in 1997, she began working for SoMA e.V (Self-Help Organisation for People with Anorectal Malformations, the German patient and parent association for people born with anorectal malformation (ARM), Hirschsprung’s disease (HD/HSCR) and cloacal exstrophy (EC) –

She was chairwoman of SoMA from 2000 to 2023, and in this function, she headed this organization with currently over 1.300 parents and patients as members. Together with the SoMA Team she developed and implemented various support projects, giving people with ARM, HD or EC a positive perspective and a higher quality of life.


After handing over this task to her successors, she is SoMA´s representative for networking and registries since October 2023. In Germany she is active as an auditor in the certification process of the German NAMSE network for centralization of care for rare diseases ( 


Nicole is not only member of the steering group of ARM-NET, she is involved in eUROGEN as Member of the Strategic Board, ePAG Representative for Workstream 1/Expertise Area 1.7 Urorectal/anorectal malformations, Member of the Working Group for the ERN eUROGEN Registry, Member of the ERN eUROGEN/ERNICA Cross-ERN Working Group on ARM/HD.

»Today I‘m very happy to see in ARM-Net so many dedicated people from so many different countries  – all of whom are committed to the research of anorectal malformations. People with this rare handicap – which is still treated as a taboo – have the same right of being in the focus of medical researchers and professionals just like other patients. I’m positive that in 20 years from now parents will know more about this disease – and will get optimum treatment if their child is born with an anorectal malformation. «