Active advisory board

"Every child has a right to a diagnosis, however rare the disease may be. I am very much looking forward to my work as a member of the Advisory Board of the Association for the Support of Children with Rare Diseases to represent the concerns of affected children and their families."

KMSK advisory board since 2024

"As a specialist in medical genetics and genetic laboratory diagnostics, I see pregnant women, children and adults every day in our genetic and interdisciplinary consultation hours with the question of whether they have a genetic disease or what a particular disease means for them and their family. I think it is very important that everyone, especially people with suspected rare diseases, has access to today's diagnostic options. Every diagnosis helps to improve care, support and treatment and to open up new prospects for children and families. We also learn from each other and can better support other families."

KMSK advisory board member since 2024

"As a pediatric rheumatologist and head of the Lucerne Center for Rare Diseases, I have first-hand experience of caring for patients with rare diseases and their families. Meaningful support is only possible with interdisciplinary teams and in close cooperation with the families. It is also important to bring those affected out of their isolation, because those around them naturally have little knowledge of life with a rare disease. The Förderverein für Kinder mit seltenen Krankheiten does exemplary work in this regard and it is an honor for me to support it as an advisory board member."

KMSK Advisory Board since 2023

"As a pediatrician with a focus on palliative care and ethics, I work as part of a team and network to ensure that families and their children with special needs do not face additional obstacles and that they receive the comprehensive support they need and want as quickly and easily as possible."

KMSK advisory board since 2023

Do you need to explain why someone wants to do something good for other people, especially children? I am a doctor, entrepreneur and politically active. And I get involved out of conviction wherever I can make a contribution so that something worthwhile can be implemented even better. The support association for children with rare diseases is something special. The people who are brought to the fore by the association deserve our support. I would therefore like to help the association do its work even better so that the children and families affected receive even better support.

KMSK advisory board since 2022

"I am committed to helping children with rare diseases because children are our future. Over 350,000 children are affected in Switzerland. The medical costs are enormous and very frightening. I am committed to children with rare diseases in politics and also economically, so that we have a fair medication policy and our people are more involved with this topic. I would also like to be a support to the family members during this stroke of fate. A smile from the affected child means everything to me and I am fully committed to this."

KMSK advisory board member since 2019

Everyday life is different for KMSK families. What is normal for many families becomes a major challenge. The problems are complex: the range of parental tasks extends from care, medical care and therapies to many organizational and legal issues. These are topics that most people have never thought about before. Balancing all of this with the family, other siblings, work and the environment is a daily balancing act. A sick or disabled child is particularly dependent on a lot of time and capacity from their family. We would like to make sure that affected parents can take this time and that the whole "trappings" are made easier for them. We want the whole family to be optimally supported, accompanied, motivated and cheered up again and again.

"Families with a sick or disabled child don't need pity, they need support."

KMSK advisory board since 2019

"Working for the charity for children with rare diseases is a matter close to my heart," says the mother of three and communications specialist. She has already hosted the KMSK charity gala five times with great charm and sensitivity.

KMSK advisory board member since 2018

"As a mother, I consider myself lucky to have two healthy adult children. I was all the more moved to see the suffering that families with rare diseases go through. This powerlessness and simply having to function. Without thinking, I decided to get involved. As a professional caregiver, I have a lot to do with social insurance, whether it's in the area of IV, helplessness compensation or supplementary benefits. I would like to use my specialist knowledge to help the families concerned with questions relating to social insurance."

KMSK advisory board member since 2018

"I didn't hesitate for a moment when Manuela Stier asked me if I would get involved in helping children with rare diseases. Of course - with all my heart! I have worked with visually impaired people, and from an early age I was very close to the disabled patients of my father, an orthopaedic technician, so I know that the often incredible strength, courage and zest for life of people who are coping with physical, mental or emotional limitations is touching. The little ones need a lot of attention and support. Not just from their parents, siblings and relatives. No, from all of us. We can all do our bit to make their everyday lives and leisure time easier. This also applies to their relatives. They also deserve our recognition and support. I look forward to many wonderful encounters."

KMSK Advisory Board member since 2017