A strong

Team

Anita Rauch is an internationally recognized physician in the field of medical genetics and human genetics. Her research focuses primarily on the genetic causes of congenital developmental disorders and has attracted international attention. She has headed the Institute of Medical Genetics at the University of Zurich since 2009. After completing her medical studies at the Universities of Regensburg and Erlangen-Nuremberg in 1994, she trained as a specialist in human genetics at the University of Erlangen-Nuremberg with study visits to Scotland and the USA. She habilitated in 2003/2004 on the clinical picture of deletion 22q11. Her clinical and scientific focus is on chromosomal disorders, microdeletion syndromes, congenital growth and development disorders, including malformations and mental retardation. Her research work is funded by the Swiss National Science Foundation, among others. She has received various national and international awards for her scientific work.

President since 2020

Click here for the video "Speech on genetic analysis - risk minimization Prof. Dr. med. Anita Rauch"

Michael Tschudin, Partner Wenger & Vieli AG, is a committed business lawyer who has been recognized by Legal500 and is a lecturer in antitrust and intellectual property law at the University of St. Gallen/HSG. As the father of two sons, it is important to him to make his wide-ranging knowledge available to the association and parents who are particularly challenged by the care of children with rare diseases.

Vice-President since 2020

"With the Federal Council's new national concept for rare diseases, the course is finally being set to provide adequate care for affected families. In addition to medical research and support, as I do in my day-to-day work as a metabolism expert, this also includes providing families with emotional support. In the support association for children with rare diseases, the affected families meet people with the same fate. This gives them strength and support in difficult times."

Board and founding member since 2014

Dr. med. Agnes Genewein, born in Munich, was Managing Director of the "Allianz Kinderspitäler der Schweiz (AllKidS)", a specialist in neonatology and medical director of medical processes at the University Children's Hospital Basel (UKBB) from 2013 to 2019. Her involvement in the "Network Rare Diseases Northwest and Central Switzerland" also dates from this time. She was also a lecturer in medical ethics at the University of Zurich and in pediatrics and palliative care at the University of Basel. Dr. Genewein studied medicine in Fribourg, Bern and Sydney, obtained a Master of Business Administration (MBA) from the University of St. Gallen and a Master of Applied Ethics (MAE) from the University of Zurich and has been a member of the Board of Directors of the non-profit Hannoversche Kinderheilanstalt Foundation since mid-February 2020.

Board member since 2019

"It feels like I've been associated with the Förderverein for an eternity and feel at home there," says Simon Grossenbacher. His son Fin was born a healthy boy in October 2015. At five months old, Fin had seizures and was diagnosed with the rare "West syndrome". Over time, new diagnoses were added - to this day, Fin is still unable to speak, walk or drink on his own and is dependent on 24-hour care. Simon says that all these challenges, battles with the authorities, discussions with doctors, sleepless nights, financial fears, setbacks but also great successes and many moments of happiness have made him the person he is today. As a Board member, he wants to stand up for all the families who are in a similar situation and give them a face so that they are heard and recognized!

Board member since 2022

Children with rare diseases in particular push families to their limits and often beyond. And it is not uncommon for single mothers to have to make the almost impossible possible. Helping these people is enormously satisfying: seeing the joy of those affected the moment the charity for children with rare diseases has solved a problem touches me deeply and creates a profound sense of satisfaction and joy. I share these feelings with my private and professional environment. In doing so, I try to make the often unknown needs of those affected transparent. Because only those who understand where the problem lies are prepared to help with commitment."

Advisory Board member from 2021 - 2022, Board member since 2022

Founding member and President 2014 - 2019, Board member 2020 - 2023

After six years, Prof. Dr. med. Thierry Carrel handed over his office as President to Prof. Dr. med. Anita Rauch at the end of 2019. He remained an active Board member for children with rare diseases until the end of 2023 Diseases. As he will be devoting more time to projects abroad in the future, he stepped down from the Board at the end of 2023.

We would like to thank him from the bottom of our hearts for the great trust he has placed in us, his enormous commitment and his helpful manner. As a medical doctor, he has played a key role in shaping the association from the very beginning!

Board member 2014 - 2023

As a founding member, she accompanied the association from 2014 until the end of 2023. The reason for her resignation was the increased focus of her work in French-speaking Switzerland. Thanks to her support, we were able to hold the KMSK Knowledge Forum at Explorit Volketswil for the first seven years. While the approximately 100 children were looked after by around 70 helpers, the 100 parents and professionals were able to take part in the Knowledge Forum.

We would like to thank them from the bottom of our hearts for their enormous commitment, the wonderful and constructive collaboration on various projects and the exciting exchanges!

Founding and Executive Board member 2014-2021

Unfortunately, our Founding member Matthias Oetterli resigned from the Board at the end of 2021 given. Matthias and his family were the reason why Manuela Stier founded the Association for children with rare diseases in 2014. He has put his heart and soul into the development of the with a great deal of passion. Thank you, dear Matthias, for helping to make the Association into what it is today. An important point of contact for affected families, whom the support association can help and make life a little easier. Thank you very much and all the best for the future.