Moments of happiness
We accompany affected families during/after the diagnosis of "rare disease" on their new journey through life!
Did you know that around 350,000 children and young people in Switzerland are affected by a rare disease? This poses major challenges for the families affected: parents who are at the end of their tether, siblings who miss out, financial worries, often isolation and battles with insurance companies. The non-profit association for children with rare diseases (KMSK) was founded on February 20, 2014 by entrepreneur Manuela Stier to support these families on their new journey through life after being diagnosed with a rare disease.
Since then, we have already connected 835 affected families and given them unforgettable
Moments of happiness. We have welcomed more than 10,000 young and old guests to the free family events throughout Switzerland. There are also 795 parents actively involved in the KMSK self-help group Switzerland on Facebook!
Relief for parents is also provided through the continuous transfer of knowledge on the subject of rare diseases in children. We are close to our wonderful families and learn a lot about their needs. Based on this, we implement sustainable projects such as the KMSK knowledge books on rare diseases, the KMSK knowledge platform (d/f/i/e) and the annual KMSK knowledge forum with live streaming for affected families, specialists and the media.
Thanks to donations
since its foundation on 20.2.2014, we have been able to financially support affected families in Switzerland with around CHF 3 million
financially, for example with therapies, aids, time out,
Mobility, etc. To make this
to make this possible in the future, we rely on donations, legacies, patronage contributions and donations in kind.
We thank you from the bottom of our hearts for your appreciated donation, which can make a big difference.
Insight into our work: KMSK Magazine SELFCARE - Rare Diseases
5. KMSK Sport Challenge from 1.4.-30.9.2024, for the benefit of Children with rare diseases. Registration is possible at any time: Registration
KMSK Sport Challenge 1.4. to 30.9.2024
REGISTRATION FOR THE 5TH KMSK SPORT CHALLENGE 2024!
By registering for the 5th KMSK Sport Challenge, you will be part of a community that is committed to supporting children with rare diseases in Switzerland through sport. Corporate and sports teams, athletes and recreational sportspeople can take part for CHF 30 via an app. And for us, inclusion in practice means that all affected families can take part free of charge. Sign up today!
Presentation of the support association
KMSK MAGAZINE SELFCARE RARE DISEASES
The first KMSK magazine SELFCARE is intended to give our dialog groups an in-depth insight into our challenging work. We also want to show how affected families, doctors, employees and patrons get involved in new projects for the support association for children with rare diseases and how they perceive the collaboration.
Sponsored run for the benefit of KMSK
Together, runners and sponsors support children with rare diseases.
The Förderverein für Kinder mit seltenen Krankheiten would like to thank the Lions Club Magglingen, the runners and the fantastic sponsors for their many years of cooperation! 100% of the donations go to affected families. Together we can give the families joy of life. It is a pleasure for me to be at the start every year. I admire the commitment of everyone involved and say THANK YOU for the wonderful collaboration! Anyone from the Biel region should definitely register: www.442.run
Crowdfunding project
KATJA - HER OWN CHILDREN'S BOOK AS A PROCESSING PROCESS
When Katja was unexpectedly diagnosed with Familial Mediterranean Fever FMF, a rare disease, in 2022, she had to realize that her fondest wish of becoming a professional athlete could not be fulfilled. Part of the process of coming to terms with this was to write a children's book and talk about the subject of rare diseases. Please help to make this wish come true and give Katja a voice for those affected with this book!
11. KMSK Knowledge Forum Rare Diseases 2.3.2024
INTERNATIONAL DAY OF RARE DISEASES (RARE DISEASE DAY) 29.2.2024
The Förderverein für Kinder mit seltenen Krankheiten celebrates its tenth anniversary in 2024 and held the 11th KMSK Knowledge Forum at the KKL Luzern on March 2, 2024. Knowledge empowers parents to engage in dialog with specialists on an equal footing. The forum was moderated by Prof. Stefan Ribler, social pedagogue, social computer scientist and lecturer in social work. We welcomed Dr. med. Yvonne Gilli, President of the Swiss Medical Association FMH, Tanja Grossenbacher, affected mother and specialists from the fields of medical genetics, paediatrics, children's spitex and education as speakers. Thanks to live streaming, the Knowledge Forum can be watched here https://shorturl.at/eghs8
Biography Sevin, butterfly disease
BEAUTIFUL, STRONG AND VULNERABLE
When Şevin was asked what she wanted, her answer was: "A biography about me and my life - so that my story lives on, even when I'm no longer in this world!" So, together with the Förderverein für Kinder mit seltenen Krankheiten, a crowdfunding campaign was launched. The project was financed within a few weeks and Şevin was overjoyed. Special thanks go to the journalist, Barbara Stotz Würgler. She took a lot of time to conduct the numerous interviews with Şevin and her family.
KMSK family events review 2023
BRUNCH AND FUN WITH GAMES AND CRAFTS AT THE BANGSHOF IN RUGGELL (FL)
More than 100 children, parents and helpers enjoyed this fun day. The brunch delighted guests young and old. There was great interest in the tractor race. Even the youngest guests had fun at the craft table.
KMSK family events review 2023
VOYAGE OF DISCOVERY AT THE FIFA MUSEUM INCLUDING A DELICIOUS BRUNCH (ZH)
For the second time, we were able to invite affected families to visit the FIFA Museum. In sunny weather, everyone met on the terrace in the middle of Zurich for a delicious brunch. We were joined by our ambassador Prisca Steinegger and Ricardo Cabanas, who enthusiastically guided our 50 young and old guests through the FIFA Museum. Knowledge and dexterity were then called for in the subsequent obstacle course. The children were able to playfully discover the museum and compete in a small competition.
KMSK family events review 2023
ART ON ICE IN ZURICH AND DAVOS (ZH)
Over five days in February 2023, a total of 200 KMSK family members were able to enjoy the Art on Ice show in Zurich and Davos. The performance was breathtaking and unique. We would like to thank the management of Art on Ice and all the talented artists for this experience.
KMSK family events review 2023
PLANTING SUNFLOWERS, ANIMAL ADVENTURES AND MOMENTS OF HAPPINESS ON THE LIECHTI FARM (SG)
No one missed out on this wonderful event! We were able to enjoy various activities and unforgettable delicacies with 50 KMSK family members. The surprise with a carriage ride was a real success for the Liechti family. We haven't laughed so much for a long time! Thank you!
KMSK family events review 2022
VISITING THE ICELANDIC HORSES (SO)
The hosts Judith, Harald, Paul, Jannik and Christoph were delighted to welcome our KMSK families. The children were then allowed to leave their fingerprints on the two-year-old Icelandic horse. Afterwards, we drove together to the fencing hall in Biel, where the children learned how to fence. We would like to thank the Pfeifer family for inviting us to this unforgettable Sunday!
KMSK Fathers' Events Review 2023
KITCHEN BATTLE FOR FATHERS IN DAVID GEISSER'S COOKING STUDIO IN WERMATSWIL (ZH)
"Put on your aprons and get to the stove!" was the motto last Monday, January 16, 2023, for 30 affected fathers at David Geisser's cooking studio in Uster. The affected fathers got to know each other over a delicious champagne aperitif. This was followed by a kitchen battle - stirring, sizzling and frying together definitely created a good atmosphere. The prepared delicacies were then enjoyed in a convivial atmosphere. And of course the teams were also judged. Congratulations to the "Fish" team for their well-deserved victory. Our heartfelt thanks to David Geisser and his team for this great event!
Thank you for your donation
YOUR DONATION MAKES A LASTING IMPACT POSSIBLE
Find out in the donation flyer of the association for children with rare diseases which objectives we pursue and which activities have been carried out. Since our foundation on February 20, 2014, we have been able to pay out around CHF 3 million in donations to affected families and invite around 9,000 family members to wonderful free KMSK family events.
Viktor Award
MANUELA STIER - MOST OUTSTANDING PERSONALITY IN THE SWISS HEALTHCARE SYSTEM
Medinside and Santemedia announced the names of the winners of the "Viktor Award 2021" at the Hotel Dolder in Zurich in 2022. Manuela Stier, founder and managing director of the Förderverein für Kinder mit seltenen Krankheiten (KMSK), was chosen as the most outstanding personality. It was important to the jury that this was a personality with a supra-regional impact throughout Switzerland and a certain innovative strength. She dedicates her victory to families whose child is affected by a rare disease. "I am very grateful for the appreciation shown to me with this award".
Support from companies
KMSK FAMILIES ON THE ROAD WITH THE BRÃœNIG STEAM TRAIN
760 Siemens Mobility employees gave up their Christmas presents in 2022 to give our families unforgettable moments of happiness. They did just that with a special trip, including lunch, on the Brünig steam train! The touching moments were captured in a video to show the significant impact of their donation.
KMSK Rare Disease Family Network
FAMILY MEMBERSHIP IN THE FREE KMSK FAMILY NETWORK
Affected families often feel misunderstood and alone. We offer you an exchange with other affected families. Register for the free KMSK family network with around 790 families. We organize wonderful KMSK family events for you, where you can exchange ideas with like-minded people and recharge your batteries. We look forward to seeing you there!
Charity concert 2023
BENEFIT CONCERT OF THE SWISS MEDICAL ORCHESTRA SMOMS
On September 9, 2023, the Swiss Medical Orchestra SMOMS organized a benefit concert for the Association for the Support of Children with Rare Diseases. As special guest, ten-year-old Elina, who is blind and suffers from the rare disease Peter's anomaly, performed a virtuoso performance on her flute at the Tonhalle Zurich. It was a moving moment when the sounds of Elina's instrument floated through the hall of the Tonhalle Zurich and touched the hearts of everyone in the audience. She proved that music can not only be heard, but also felt.
KMSK Financial support
APPLICATION FOR FINANCIAL SUPPORT
Rare diseases can also become a major financial burden for families. We help affected families - in a needs-based, uncomplicated and sustainable way. Since the foundation of the support association on 20.2.2014, we have been able to pay out around CHF 2.7 million to affected families. This for therapies, mobility, aids, relief, etc. Click here for the funding application.
KMSK self-help group Switzerland
KMSK SELF-HELP GROUP SWITZERLAND ON FACEBOOK
As a newly affected family, you feel alone and are looking for answers, solutions and an exchange with like-minded people. This is what we offer in the closed KMSK self-help group Switzerland on Facebook. Over 760 affected mothers and fathers now share their experiences here and form a wonderful community. Please register via Facebook: KMSK self-help group Switzerland
Media presence
CREATING UNDERSTANDING FOR RARE DISEASES
Thanks to our media presence, we can create a better social and political understanding of rare diseases. in 2023, 80 media reports in print, online, TV and radio were produced in cooperation with the association. We would like to thank our valued media partners and, of course, our KMSK families and specialists for their trust.
Crowdfunding for affected families
HERE YOU CAN SUPPORT FAMILIES DIRECTLY!
Would you like to help children and young people to finance therapy, aids and mobility in order to improve their quality of life? With a restricted donation, you enable the fulfillment of sustainable wishes such as therapies that are not covered by IV or health insurance or aids to make everyday life and mobility easier.
KMSK Knowledge Book Rare Diseases No 5
RARE DISEASES - DIGITAL KNOWLEDGE PLATFORM FOR PARENTS AND PROFESSIONALS
With the 5th KMSK Knowledge Book "Rare Diseases - Digital Knowledge Platform for Parents and Professionals", we are providing (newly) affected families and professionals with a sustainable aid tool. The book was developed in close collaboration with our 725 affected KMSK families and great guest authors, photographers and journalists. May this concentrated power of knowledge and experience make the often arduous everyday lives of the approximately 350,000 children and young people affected by a rare disease in Switzerland a little easier so that they can spend more time with themselves and their families. The book can be ordered free of charge and is available as a PDF.
KMSK Knowledge Book Rare Diseases No 6
CASE MANAGEMENT AND DIGITALIZATION RELIEVE PARENTS
In the sixth KMSK Knowledge Book "Rare Diseases - Case Management and Digitalization Relieve Parents", we address the challenges in the interaction between parents, doctors and other stakeholders, let affected families and specialists have their say and point out possible solutions. Order your free copies today!
KMSK Knowledge book rare diseases No 4
RARE DISEASES - PSYCHOSOCIAL CHALLENGES FOR PARENTS AND SIBLINGS
Thanks to the knowledge of our KMSK families, the fourth KMSK knowledge book "Rare diseases - psychosocial challenges for parents and siblings" has already been published. This book sheds light on the diverse tasks that arise for affected families and shows what helps them to cope. After all, a rare disease upsets the lives of affected families, destroys dreams and life plans and is a huge challenge for mothers, fathers and siblings.
KMSK Knowledge book rare diseases No 3
RARE DISEASES - THERAPIES FOR CHILDREN AND SUPPORT FOR FAMILIES
The third KMSK Knowledge Book on Rare Diseases shows which specific support options are available in everyday life, which forms of therapy have proven successful for affected families and where they can get help if they lose sight of the big picture. Edition of 11,000 copies, 300 books are still available.
KMSK Knowledge book rare diseases No 2
RARE DISEASES - THE PATH - GENETICS, EVERYDAY LIFE, FAMILY AND LIFE PLANNING
The second KMSK Knowledge Book shows the lives of the families concerned. Various stages are illuminated: From the first signs of an illness, medical and genetic investigations, everyday life to family and life planning. Print run 11,000 copies, 800 books available.
KMSK Knowledge book rare diseases No 1
RARE DISEASES - INSIGHTS INTO THE LIVES OF AFFECTED FAMILIES
With the first edition of the KMSK knowledge book "Rare diseases - insights into the lives of affected families", we wanted to raise awareness of the families in Switzerland whose children are affected by a rare disease. Edition of 10,000 copies, 500 books available.
Interactive children's book "Inclusion - No one is too small to be a special friend"
WITH 60 CRAFT AND GAME IDEAS FOR CHILDREN AGED 4 AND OVER
Manuela Stier, Managing Director of the Förderverein für Kinder mit seltenen Krankheiten and social pedagogue Melanie Spescha are jointly launching the interactive children's book "Inklusion - Keiner zu klein ein besonderer Freund zu sein" about friendship and disability. The aim is to promote inclusion in nurseries, kindergartens, schools and society in the long term. The children's book tells the touching story of seven animal friends about friendship and disability. In addition to appealing illustrations, you also get access to 60 suitable play and craft ideas.
KMSK Christmas movie
Moments of happiness for children with rare diseases
A Christmas video that gives you goosebumps! Special moments of happiness! Four families from the support association for children with rare diseases were able to spend an evening in the toy store. Thanks to our sponsor AXA Switzerland, one of these children's dreams came true! The result is a Christmas movie that will give you goosebumps! This year, the film has reached 276,106 impressions, 3687 likes, has been shared 1185 times and has received 205 feedbacks on www.linkedin.com/in/mastier/! Unbelievable!
Videos and solidarity songs
TAKE YOUR TIME FOR THESE TOUCHING VIDEO IMPRESSIONS
Immerse yourself in the moving stories of affected families, wonderful moments of happiness from our KMSK family events, exciting presentations by experts and listen to 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.
Music video Rare diseases "Bananefüess"
MUSIC VIDEO BY SAM NATIONAL AND CHILDREN WITH RARE DISEASES
Some of our children with rare diseases created a viral hit together with Zurich musician Sam National. With the song "Bananefüess", a cool music clip was realized within three weeks, which provided variety and a good mood for affected KMSK families during the corona crisis.