Videos and
Solidarity songs
Video impressions and solidarity songs
Immerse yourself in moving stories, wonderful moments of happiness, exciting speeches and emotional solidarity songs! All solidarity songs were written and produced free of charge by the artists to give a voice to the 350,000 children and young people affected in Switzerland.
8. KMSK Benefit Gala 2024
On 20.9.2024, the association organized the 8th KMSK Benefit Gala in Horgen for the benefit of children with rare diseases in Switzerland. The auction raised CHF 40,000. Three-year-old Brandon, who has the rare Angelman syndrome, enchanted the 105 guests. In a moving interview with the parents and siblings, those present learned how exhausting everyday life with an impaired child can be.
KMSK family event: A visit to the Dreieichen farm
In September 2024, we were able to invite 50 KMSK family members to a very special day at the Dreieichen farm in Schaffhausen. High above the town of Schaffhausen, Barbara's families were waiting for us full of joy. The Scottish Galloway cattle stood in the pasture and the baby goats and sheep invited us to cuddle them. The landlord Marco took the children out into the countryside on his huge tractor and the little ones waved proudly to their parents on their return.
We would like to thank our patrons, helpers, photographers and videographer from the bottom of our hearts for their tireless commitment!
KMSK family event: Flieger Flab Museum & Rockabilly Sound
KMSK family event: Anniversary brunch at the Autobau Erlebniswelt for children with rare diseases
KMSK family event: A visit to the FIFA Museum
Fulfilled: Lian's heart's desire, Louis Bar Syndrome
Thirteen-year-old Lian, who has Louis Bar syndrome, wanted to be able to continue attending his special needs school. Unfortunately, the school fees are very difficult for his mother to afford and the IV refused to cover the costs. The Porsche Center Winterthur, a long-standing partner of ours, then decided to organize a fundraising gala in the form of a casino night. All the proceeds went to the family so that the costs of the special education school could be paid for another year. Lian and his mom were over the moon!
KMSK Christmas Event Hotel Sonne
A wonderful end to the year for the team of the Association for the Support of Children with Rare Diseases, the families affected and the patrons present. Eevolve AG made the children's eyes light up with its donation of Christmas presents. We were also able to count on the support of the Romantik Hotel Sonne and the Schröter family.
KMSK family event: Winterwonderland - Uster on Ice
We would like to thank our host, Winterwonderland Uster on Ice, for this wonderful and unforgettable experience! Since our foundation on 20.2.2014, we have already welcomed more than 9000 young and old guests to our KMSK family events. This would not be possible without the support of patrons and donors.
KMSK family event: forest walk with alpacas
They smell of fresh popcorn and the look in their big eyes makes everyone want to cuddle them! On 14.10.2023, 15 children with rare diseases and their families experienced an unforgettable walk with alpacas to the magical forest clearing and enjoyed the picturesque mountain panorama. After a tasty snack, the children were treated to a little surprise! Many thanks to Andi and his team from Alpakahof in Bern!
KMSK fathers' event: bartending & barbecue course
KMSK family event: classic car tour in Schaffhausen
At the Helptour on 26.08.2023, organized by the three Rotary Clubs Schaffhausen, Schaffhausen-Munot and Zürcher Weinland, numerous families (52 big and small guests) came together and experienced wonderful rides in classic cars. New friendships were made again under two KMSK tents, so even a little rain was no reason to have fun. Many thanks to the three Rotary Clubs for this special day!
KMSK family event: Adventure on rails
The employees of Siemens Mobility
Switzerland gave up their Christmas presents to give our families unforgettable
Moments of happiness. On 29.07.2023, they organized a special trip on the Brünig
Steam train, including lunch, from Interlaken to Meiringen (BE) and back
and back. Together with 60 KMSK family members
from all over Switzerland, 40 people from Siemens (employees and their families) enjoyed this unique
And their families) enjoyed this unique experience.
KMSK family event: Fondue fun on the lake
On board the Stedi ship erMarina in Ermatingen (TG), our families were invited to a fondue party on 18.12.2022. After a cozy Aperitif against the snowy backdrop of Untersee, the children gave free rein to their Creativity, painting and crafting extensively. This was followed by a Followed by a fondue party, accompanied by stimulating conversations between the families. A musical surprise musical surprise was provided by the band "The B-Shakers", who played their cheerful their cheerful rockabilly sound, had the children dancing joyfully on the footbridge. A wonderful start to the Christmas season!
KMSK Family Event: Liechti Stables
Four students from the University of St. Gallen approached our Managing Director with a great idea. As their master's thesis they wanted to organize an event for affected families. Just one month later, on 30.04.2023, they welcomed at Stall Liechti in Algetshausen (SG), 50 KMSK family members. The brunch, the carriage ride, the horse riding and the And play were carefully tailored to the needs of the children concerned and their Siblings and will be fondly remembered by all participants will remain fondest memories. The impressions of this event were captured in a touching video captured in a touching video.
Click here for the video
KMSK family event: car construction 2019
At the big family event on 01.09.2019 for children with rare diseases, around 120 young and old guests were able to explore the car building adventure world . From Formula 1 racing cars to sleek classic cars, countless cars were waiting to be discovered. On the mini-racing track, the children were allowed to get behind the wheel of soapboxes themselves. The cab ride in an American vintage convertible was also a unique experience. And a large brunch buffet provided for a cozy exchange. We would like to thank the sponsors who made this event possible.
KMSK family event: Kindercity 2019
On February 23, 2019, over 250 guests of all ages enjoyed a break from their everyday lives and spent valuable time together with their families. The children became artists by painting clothes hangers, had their picture taken with the comic book hero Superman and Princess Elsa or discovered lots of exciting things on the knowledge trail. Parents were able to listen to an interesting panel discussion and presentations on the topic of "Rare diseases - genetics, diagnostics and the desire to have more children". We would like to thank the more than 50 volunteers, our sponsors, the Kindercity team and Christine Maier for moderating the event. As always, it was heart-warming to see how much the children and their parents enjoyed the day.
Fulfilled: Eris' heart's desire, glass bones
Nine-year-old Eris with glass bones has one big wish Heart's desire: He wants to be able to walk! A Galileo device would strengthen his Build up his muscles and help him achieve his dream. But there was a problem Problem: the IV refused to cover the costs and the parents couldn't finance it themselves finance it themselves. When the Porsche Center Winterthur, a long-standing partner partner of ours, learned of this fate, the CEO decided to work together with the together with the customers and employees to fulfill Eris' wish. At the The check was presented to the family at the Christmas aperitif - Eris was overjoyed!
Watch the video hereSRF Mona mittendrin - For children with rare diseases
The SRF Intro filming for "Mona mittendrin" on 6.10.2021 was carried out at the 4th KMSK family event at the autobau erlebniswelt in Romanshorn. The following week, Mona and the SRF film crew visited three of our 780 KMSK families in Biel, Lucerne and Muhen. Their aim: to find out more about the lives of affected families.
10. KMSK Knowledge Forum "Rare Diseases"
As part of the International Day of Rare Diseases (28.
February 2023), the 10th KMSK Knowledge Forum was held on 25.2.2023 by the
Association for Children with Rare Diseases on the topic of
"Insurance benefits, application and enforcement" at the KKL Lucerne
took place. The focus was on the struggle for insurance and
Support services from various perspectives. In
a lively panel discussion between Martin Boltshauser, Attorney-at-Law,
Head of Legal Services, Member of the Procap Switzerland Executive Board,
Irene Weber-Hallauer, social worker specializing in illness and disability, Christina Schönholzer
Christina Schönholzer, affected mother of Mira, Dr. med.
Tobias Iff, FMH pediatrics and adolescent medicine, specializing in neuropaediatrics
Center for Pediatric Neurology AG and Dieter Widmer, Managing
Director, IV-Stelle Kanton Bern (author of the book "Die
Social Insurance in Switzerland), a huge flow of knowledge was achieved in just under three hours
knowledge flow was achieved in just under three hours.
Video presentation by Manuela Stier, founder and managing director of KMSK
9. KMSK Knowledge Forum "Rare Diseases"
To mark International Day of Rare Diseases, we hosted the virtual 9th KMSK Knowledge Forum on the topic of "Psychosocial challenges in dealing with a rare disease". Due to the current Covid situation, this was held via live streaming for the first time.
The forum shed light on the various problems that arise for affected families and showed what and who can help them cope.
We welcomed the following as panel guests: Christine Maier, KMSK Advisory Board member Simon Starkl, KMSK Advisory Board Patric Benz, affected father Marisa Widmer, affected mother Anja Gestmann , Managing Director of Entlastungsdienst Schweiz Prof. Dr. med. Anita Rauch, President KMSK, Director of the Institute of Medical Genetics at the University of Zurich
Presentation on "Genetic analysis - risk minimization" by Prof. Dr. med. Anita Rauch
To mark the International Day of Rare Diseases, the Association for the Promotion of Children with Rare Diseases invited affected families and panel guests to the 8th KMSK Knowledge Forum on 23.2.2019. An important part of the event was the specialist presentation "Gene analysis - risk minimization" by Prof. Dr. med. Anita Rauch from the Institute of Medical Genetics at the University of Zurich UZH.
Amendment to the law to support family caregivers
The Federal Social Insurance Office FSIO has passed a new law as of July 1, 2021: Parents who care for a seriously ill child are now entitled to 14 weeks of paid care leave. This is intended to improve the compatibility of work and caring for relatives and relieve the burden on parents who are caring for a seriously impaired child.
The Federal Social Insurance Office, together with the Association for the Promotion of Children with Rare Diseases and one of our 593 affected KMSK families, has produced this information video to explain the new federal law for family caregivers.
The Federal Council has adopted an action plan to support and relieve the burden on family carers in order to make it easier to combine caring for relatives with a career. These measures will be implemented with the Federal Act on Improving the Compatibility of Gainful Employment and Caring for Relatives.
We would like to thank the Federal Social Insurance Office for their excellent cooperation.
Rare diseases: Elodie and Salla disease
Elodie is one of around 350,000 children affected by a rare disease in Switzerland. Our video documentary from 2015 shows what Salla disease means for Elodie's family and the challenges her parents face in everyday life. Although dealing with the consequences of the disease is sometimes difficult, Elodie is developing well and the family is happy.
Video explaining children with rare diseases
Michael Herrmann sponsored and produced an explanatory video about the support association for children with rare diseases. The non-profit support association is committed to helping affected families. It organizes direct financial aid, promotes the exchange between affected families and anchors the topic of rare diseases in the public eye. We are in close contact with affected families in Switzerland. In this way, we guarantee that the financial aid goes directly to where it is urgently needed.
Christmas video 2020
In December 2020, two AXA Switzerland employees produced a very special Christmas video together with four families from the Association for the Support of Children with Rare Diseases! Thank you from the bottom of our hearts for these unforgettable moments of happiness for our families.
TopTalk on the topic of "Children helping children" 2015
"Children help children" was the motto on November 29, 2015 in Winterthur. On the first Advent, the Hotel Banana City was transformed into a Christmas world. Donations were collected for the support association for children with rare diseases. With handicrafts, candle making, a wheel of fortune, Santa Claus and the musical "Peter Pan", it was the perfect start to the Advent season.
That's why the November 2015 TopTalk on TeleTop reported on the association and introduced little Lara, who had a very rare disease. Also in the studio were Manuela Stier, founder of KMSK, and Bettina Kaegi, who had brought along Peter Pan and Tinkerbell, the main characters in her musical. Many thanks to TeleTop for their great support!
Sadly, little Lara left our world forever in June 2016. But her laughter will always live on in our hearts.
Solidarity song by Markus Stadelmann: No matter what happens
Markus Stadelmann, himself a passionate father of two little girls, originally wrote the song for his youngest daughter. However, as an ambassador for the Association for the Promotion of Children with Rare Diseases, he quickly realized that his lyrics were so fitting for the 350,000 children and young people affected throughout Switzerland and their families.
"Affected families rise above themselves every day, fight for their children and shower them with endless love. They are always there for their sick children, no matter what - that impresses me deeply," says Stadelmann, explaining his commitment.
Solidarity song by Sam National: Bananefüess
Watch the music video here
Solidarity song by Lerocque: Perfect
"I'm beautifully different, so imperfectly perfect", sings Lucerne singer Lerocque in his song, which he wrote for the 350,000 children and young people suffering from a rare disease in Switzerland. The song was produced free of charge by singer Lerocque, pde and freshcom.ch for the association that supports children with rare diseases.
The three-minute music video was released at the KMSK family event at Kindercity in Volketswil on 26.2.2017 to mark Rare Disease Day. From July to December 2017, the KMSK song could also be heard on SWISS and Edelweiss Air flights.
Solidarity song by Belerat: A song for Sevin
How great is this; the rapper Belerat has written and produced a rap song for Sevin. Listen to the motivating words with which he wishes the girl, who is affected by the very painful butterfly disease, a lot of strength. This song reached over 11,240 people on Facebook and has had over 1,190 interactions to date. A big thank you to the rapper Belerat (Instagram belerat_05).