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We accompany families on their new journey through life after being diagnosed with a rare disease!
The non-profit support association for children with rare diseases was founded on February 20, 2014 by Manuela Stier to provide families affected by a rare disease with reliable support on their new journey through life.
SUPPORTING FAMILIES FINANCIALLY
Financial help is one of the keys to relieving the burden on families. Over the past ten years, the association has been able to pay out around CHF 3.3 million to affected families. This amount goes far beyond figures and statistics - it represents the smiles on the faces of parents who can finally afford the therapy or aids they need, and the relief of parents who no longer have to worry about financial burdens.
CONNECTING FAMILIES
Ten years, 865 families, a dynamic community. The support association brings together affected families from all over Switzerland who face similar challenges in their everyday lives. We have welcomed more than 11,000 family members, young and old, to our free KMSK family events, which not only serve as a forum for exchange, but also create moments of happiness and new energy. There are also 855 parents actively involved in the digital self-help group on Facebook.
KNOWLEDGE TRANSFER
Relief is also provided through the continuous transfer of knowledge on the topic of rare diseases in children for parents, specialists, trainees, health authorities, politicians, the FOPH, patient organizations, the media and the general public. We pool knowledge and make it available free of charge. This includes the digital KMSK Rare Diseases Knowledge Platform (d/f/i/e), the six KMSK Rare Diseases Knowledge Books, the KMSK magazine SELFCARE and the annual KMSK Rare Diseases Knowledge Forum with live streaming on International Rare Disease Day.
SIGNIFICANTLY IMPROVING QUALITY OF LIFE
We rely on your support to continue to accompany affected families on their journey through life, provide financial relief, give them moments of happiness and impart knowledge. We guarantee that your donation will be used responsibly and that we will always act in the best interests of the families concerned. As we do not receive any state funding, donations are of the utmost relevance to us. Your donation will have a lasting effect on us, and we and our 865 affected families thank you for your trust.
Förderverein für Kinder mit seltenen Krankheiten - Switzerland's largest rare disease network for affected children and young people with a rare disease and their families!
International Day of Rare Diseases Switzerland
We would like to welcome you on February 28, 2025 to the 12th KMSK Knowledge Forum Rare Diseases
Diseases - The challenging path before and after diagnosis in
Basel. Free registration here
12. KMSK Knowledge Forum Rare Diseases 28.2.2025
INTERNATIONAL RARE DISEASE DAY 28.2.2025
Experience the exciting panel discussion with affected parents, KMSK President Prof. Dr. med. Anita Rauch, Dr. med. Katharina Gasser, General Manager of Roche Pharma (Schweiz) AG and Prof. Dr. med. Henrik Köhler, KMSK Advisory Board on the topic of Rare Diseases - The challenges before and after diagnosis. The 12th KMSK Knowledge Forum will take place on 28.2.2025, 10.30 a.m. in Basel in the auditorium of the Roche Tower and will be made accessible to everyone via live streaming.
KMSK Magazine SELFCARE No 2
THE ARDUOUS PATH BEFORE AND AFTER THE DIAGNOSIS
In spring 2024, we learned about three families who were inadequately diagnosed with a rare disease for their child. We therefore dedicated the second issue of our KMSK magazine SELFCARE to the emotional rollercoaster ride before and after the diagnosis. In addition, we conducted a survey of 120 families to find out about their experiences and what could be improved. Read testimonials and expert contributions on the topic.
KMSK Rare Disease Family Network Switzerland
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 835 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!
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 820 affected mothers and fathers now share their experiences here and form a wonderful community. Please register via Facebook: KMSK self-help group Switzerland
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 3.3 million to affected families. This for therapies, mobility, aids, relief, etc. Click here for the funding application.
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.
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.
1. KMSK Mothers' Event, Review 2024
APERITIF AND DINNER FOR 30 MOTHERS ENJOY THE EXCHANGE
The 1st KMSK Mothers' Event at the Hof zur chalte Hose was a lot of fun for 30 mothers! Feedback from one mother: "Wooow what great pictures and so nice to be able to experience the wonderful evening in the form of these great pictures. It's soooo nice to see how happy and relaxed everyone is. Just feel yourself again and recharge your batteries with the great photos. Many thanks for everything, Evelyn". We want to give mothers a little time out and time for themselves.
Review of the 8th KMSK Benefit Gala 2024
8. KMSK CHARITY 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 his parents and siblings, the attendees learned how exhausting everyday life with a disabled child can be.
3. KMSK fathers' event, review 2024
BARBECUE AND EXCLUSIVE WINE TASTING AT THE HOTEL MANAGEMENT SCHOOL ZURICH
The popular KMSK Fathers' Event took place for the third time. Together with the Zurich Hotel Management School, we were once again able to invite our KMSK fathers to a culinary evening. The absolute highlight this time was the wine tasting with Thomas Marugg. His humorous manner and the valuable information he provided will be fondly remembered. Thanks to all of you!
KMSK Sport Challenge 2024
REVIEW 5TH KMSK SPORT CHALLENGE 2024
The 5th KMSK Sport Challenge ended on September 30 with 457 participants from all over Switzerland. Our goal of collecting 1 million Fredi points was far exceeded. In total, an incredible 3.09 million Fredis were collected! The participants' daily postings clearly showed how much fun they had with the challenge and how motivated they were. A huge thank you to all participants.
Sponsored run 442.run in Biel - Review
GREAT SUPPORT FOR CHILDREN WITH RARE DISEASES!
450 runners achieved around 968,864 meters in altitude on the 442nd run and raised an incredible CHF 97,410! The Lions Club Magglingen has been organizing this run since 2021. 90% of the donations go to the support association for children with rare diseases. This amount goes 1:1 to KMSK families and gives them a better quality of life. We thank you from the bottom of our hearts for this long-standing collaboration and your support!
KMSK family events review 2024
VOYAGE OF DISCOVERY AT THE FIFA MUSEUM AND DELICIOUS BRUNCH (ZH)
For the third time, we were able to visit the FIFA Museum with 50 KMSK family members on this cool adventure day. The exhibition at the FIFA Museum is dedicated to the game that unites and inspires the world. The interactive museum run was a lot of fun. Afterwards, we were treated to a delicious brunch at beautifully laid tables. Many thanks to the FIFA team, who worked tirelessly and wholeheartedly!
KMSK family events, review 2024
EBIANUM EXCAVATOR MUSEUM FISIBACH (ZH)
Last Saturday, thanks to our sponsor Eberhart Bau AG Kloten, we were able to spend an eventful day at the EBIANUM with 50 KMSK family members. We climbed on historical construction machinery and vehicles from over 100 years of construction history. Young and old alike dug and excavated in the large sandpits. We had a wonderful time together over delicious pasta, sponsored by Cha Gourmet Bachs. At the end, each child received a surprise gift from EBIANUM as a souvenir. Thanks to the families for the good mood they were able to bring with them despite the difficult times!
KMSK family events review 2024
GIFT MAGIC AND BREAKFAST AT EMIL FREY CLASSICS AG (AG)
Moments of happiness for children with rare diseases and their families at Emil Frey Classics AG! In January 2024, we were invited to Safenwil with 80 guests for a gift presentation and a lovely breakfast. The affected children and their siblings were able to unwrap and admire their gift on site before continuing with a hearty breakfast. We would like to thank the hostess and her friendly team, as well as the 20 sponsors for the gifts!
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 Magazine SELFCARE No 1
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.
Thank you for your donation
YOUR DONATION MAKES A LASTING IMPACT POSSIBLE
Read the donation flyer of the association for children with rare diseases to find out what objectives we pursue and what activities have been carried out. Since our foundation on February 20, 2014, we have been able to pay out around CHF 3.3 million in donations to affected families and invite around 11,000 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".
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.
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 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 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.