MEDIENECHO

February 29 only occurs in leap years. Due to its rarity, it was chosen as the International Day of Rare Diseases. Reason enough to give the Oberland organization Förderverein für Kinder mit seltenen Krankheiten a voice.

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February 29 only occurs in leap years. Because of its rarity, it was chosen as the International Day of Rare Diseases. Reason enough to make the voice of Manuela Stier from Oberland, founder of the Association for the Promotion of Children with Rare Diseases, heard.

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Around 350,000 children and young people in Switzerland have a rare disease. Tim is one of them. His family tells his story.

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On the occasion of the International Day of Rare Diseases on February 28, attention was drawn to the current challenges and needs of those affected.

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The Association for the Support of Children with Rare Diseases celebrated its tenth anniversary on February 20, 2024. Much has been achieved in the past decade. In this Mediaplanet supplement in Brigitt magazine, you can see the article "Strengthening families sustainably" by our Managing Director Manuela Stier. There is also an interview with Lian's mother, who has Louis Bar syndrome two, and an interview with Noemi's mother, who has neurofibromatosis. These are two of the 830 KMSK member families.

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into her work and the topic of rare diseases

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Fin (8) from Oberdürnten suffers from a rare form of epilepsy. The parents are trying to make their son's life better with special therapies all over the world. However, health insurance and disability insurance pay nothing towards this.

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1 million stars - The Naters Parish Council invites you to a place of encounter on 10.12.2023

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The sixth KMSK Knowledge Book "Rare Diseases - Case Management and Digitalization Relieve Parents" inspires affected families and professionals. Among others, a family from the canton of St.Gallen tells their touching story.

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From "Challenges for parents" to "Transparency thanks to digital tools" and "Improvement thanks to new research approaches" - the 6th KMSK Knowledge Book on Rare Diseases uses 14 different subtopics and two current studies to highlight the challenges and opportunities in relation to case management and digitalization for affected families. Among other things, an affected family from the canton of Solothurn tells their touching story.

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Benefit Gala

A total of CHF 42,290 was raised thanks to various donations in kind from patrons.

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Manuela Stier is an entrepreneur and communications expert. When she became aware of rare diseases while working for a foundation, she founded the Förderverein für Kinder mit seltenen Krankheiten in 2014. Since then, she has been committed to supporting families dealing with this fate and facing many challenges. This includes financial aid, events for networking and exchange as well as a large collection of information. The website has become a valuable source of information and the support association also provides important know-how in the form of the knowledge book.

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A day of happiness: On September 23, 2023, 22 children with rare diseases and their families experienced a truly magical adventure at Rapperswil Children's Zoo.

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Happy is he who makes happy. The artist Daniela Gauch celebrates her 15th anniversary in Küssnacht and supports the association for children with rare diseases with over CHF 6000!

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24 years ago, artist Daniela Gauch took the plunge into self-employment. The career changer explains why silence is a balm for her ears and how people inspire her. She is showing a cross-section of her work in her art gallery in Küssnacht and is donating 20% of her anniversary sales to the charity for children with rare diseases.

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Elina has been blind since birth. She suffers from the rare disease Peter's anomaly. This is a congenital malformation of the eye. This does not stop the ten-year-old girl from pursuing her passion for music. She learned to write music for the blind and now plays the flute. She will demonstrate her skills to the audience at the benefit concert of the Swiss Medical Orchestra SMOMS.

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Sevin: "A biography about me and my life - so that my story lives on, even when I am no longer in this world." But who is
Sevin? The young woman who radiates so much strength, beauty, joie de vivre and an irrepressible will to live? Who carries so much wisdom and endures hellish pain?

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The Rare Diseases - Support Association for Children with Rare Diseases Switzerland has contributed three articles on the important topic of knowledge transfer and digitization. The Edito by our President Prof. Dr. med. Anita Rauch, Director of the Institute of Medical Genetics at the University of Zurich, an article about the new knowledge platform (D/E/F/I) www.wissensplattform.kmsk.ch of the Swiss Association for the Promotion of Rare Diseases and the story of one of our KMSK families from Eastern Switzerland with Noemi, rare disease neurofibromatosis.

Link supplement

Daniel Krähenbühl reports on our 4th KMSK Sport Challenge 2023 on Radio Zürisee and provides information about the process. Manuela Stier answers questions and provides more details.

Link radio report

Désirée W. suspected early on that something was wrong with her daughter Noemi. As a premature baby, she was already struggling with her weight. "Noemi always struggled to eat and lagged behind in her development," says the mother of two from Sonterswil. She sensed that there was something else going on with Noemi, but couldn't put her finger on it.

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Today is Rare Disease Day. Around 350,000 children and young people in Switzerland are affected by rare diseases. One of them is Silvio Wüthrich from Laupersdorf. The boy has a genetic defect which, among other things, delays his development. His parents explain what such a rare disease means for the whole family.

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February 28, 2023 is the International Day of Rare Diseases. Around 350,000 children and young people in Switzerland are affected by a rare disease. One of them is Fin Grossenbacher, who is affected by West syndrome. His father Simon Grossenbacher tells us his story and how the support association for children with rare diseases helped him.

Around eight percent of the Swiss population suffer from a rare disease, half of which are children and young people - like 17-year-old Noelia, who suffers from a rare genetic defect that affects her mentally, linguistically and physically.

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Four-and-a-half-year-old Olivia Gaspar is used to pain. She had to endure a 14-hour operation due to a brain tumor. Afterwards, she lived for a long time with an artificial opening in her windpipe and a cannula to help her breathe. She continues to be fed artificially. Olivia can rely on her parents Anita and Olivier and on external help. Over 300 million people worldwide suffer from one of over 7000 rare diseases. Rare Disease Day draws attention to these fates.

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Around 350,000 children in Switzerland suffer from a rare disease. This is a major challenge for parents. At the KKL Lucerne on Saturday, those affected were able to talk to experts and discuss what still needs to change.

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Around 350,000 children in Switzerland suffer from a rare disease. This is a huge challenge for parents. Not only emotionally and organizationally, but often also bureaucratically. Especially when it comes to financial support from disability insurance or health insurance. At the KKL today, experts and those affected discussed what still needs to change. So that parents can concentrate fully on their child.

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Parents of children and young people with rare diseases (around 350,000 people affected in Switzerland) carry a heavy burden. It is often not only their fate that burdens these families, but also the search for a solution with the disability insurance.

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Scattered boxes on the floor, advertising posters showing smiling children, a box full of green plush frogs: Manuela Stier has invited people into the new office space. "At last. It was tedious working among cardboard boxes." The 60-year-old moved her association for children with rare diseases (KMSK) in Uster last fall. She is the founder and managing director of an association that supports around 350,000 children and their families across the country. For her efforts, the Maurmerin was named the most outstanding personality in Swiss healthcare with the Viktor Award 2021.

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When a child comes to Oswald Hasselmann for a consultation, they have usually already seen several doctors. This is because Hasselmann's patients are suspected of having a rare disease. Compared to most other children, their development is atypical and the symptoms do not match any generally known disease.

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As darkness falls, the lights gradually come on in the Sonnenhof. Small Christmas trees twinkle behind some of the windows, while homemade stars dangle from others. Until a few years ago, elderly senior citizens were cared for in the former retirement home at the foot of the vineyards in the Zurich Gold Coast municipality of Küsnacht. Since March, 25 children with cancer from Ukraine have been housed here.

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The crystal-clear water laps against the jetty, the sun beats down on the Caribbean bay. Dolphins swim in the sea with children whose wheelchairs are on land. Nine-year-old Fiora also swam in the lagoon in July. In Curaçao, over 8,000 kilometers away from her home in Schlatt-Haslen, the most effective therapy for the multiply disabled girl from Appenzell Innerrhoden takes place. Fiora has Rett syndrome.

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Knowledge platform Specialists often reach their limits with rare diseases. A new knowledge platform from the Förderverein für Kinder mit seltenen Krankheiten now offers support. The platform was created on the initiative of Manuela Stier, founder and managing director of the association.

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In the first episode of "Tenalp mitenand", we visit Manuela Stier from the Förderverein für Kinder mit seltenen Krankheiten (KMSK) in Uster. She gives us, and therefore you too, a very exciting insight into the various activities of the association, personal stories and future plans.

Link to the podcast episode

Åževin films herself on her cell phone and tells her 3500 Instagram followers about her everyday life. How happy she was about the long-awaited visit from her best friend and how much she likes her. Just like many other 16-year-olds do. So normal - and yet so different. Because nothing about Åževin's everyday life is normal. She suffers from butterfly disease.

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The support association for children with rare diseases has raised another 40,000 francs. The charity gala with pianist Chris Conz and band at the Belvoirpark restaurant in Zurich was well worth it.

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In the latest issue of Mediaplanet's themed magazine "Rare Diseases", Manuela Stier, founder and managing director of the KMSK association for children with rare diseases, is interviewed and the biography "Åževin - Beautiful, Strong and Vulnerable: Her Life with Butterfly Disease" is explained in more detail.

Link supplement

The Kiwanis Club Rapperswil and the Lions Club Linth can report a record donation at this year's charity golf tournament.

At this year's tournament, donations were collected for the benefit of the "Förderverein für Kinder mit seltenen Krankheiten"(www.kmsk.ch). The new donation record of CHF 32,468.25 was achieved thanks to the generosity of the two general sponsors, Bank Linth LLB AG and Porsche Zentrum oberer Zürichsee, Golf Park Zürichsee and KIBAG AG, the Christian Bachschuster Foundation and many other prize and advertising sponsors.

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Manuela Stier has won the "Viktor Award" 2022. The entrepreneur founded the non-profit association for children with rare diseases (KMSK) in 2014. She explains how she supports affected families on their journey in the long term, be it financially, with knowledge transfer or family events.

Link article, Hochdorfer Woche

Link article, Horgener Woche

In today's episode, I have the pleasure of interviewing the founder of the charity KMSK (Children with Rare Diseases). It is a topic that I consider to be very important in today's world and therefore it was a matter close to my heart to record this episode. I myself was very surprised at how many families are affected by this in Switzerland and was impressed by the support the association has provided. We will talk about this, introduce you to the projects and activities and you will also find out how you can make a contribution together with your children. This can be a valuable experience, especially at a young age.

Link Interview Part 1

"Persönlich" is Switzerland's first live radio talk show, making it one of the most successful programs on SRF 1 radio. Around 450,000 listeners tune in live every Sunday morning to hear two guests talk about their lives.

Manuela Stier has no children herself. "I knew early on that I didn't want children," she says without beating around the bush. She used her time and energy as an entrepreneur in the communications industry. Until she turned fifty and asked herself, "Is that it, is what I'm doing here actually worthwhile?"

Link Talk show with Daniela Lager, Marco Todisco and Manuela Stier

Doing sport and supporting children with rare diseases at the same time - the KMSK Sport Challenge kills two birds with one stone, so to speak. Initiator Manuela Stier explains why so much passion is put into it.

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In June and September 2022, the time has come. For one month at a time, individuals, companies and sports teams can help support children with rare diseases.

With the 3rd KMSK Sport Challenge 2022, the charity for children with rare diseases wants to combine four elements: to show affected families that there is a large and motivated community behind them and to give them visibility. Encourage the Swiss population to take part in sport and raise funds for children and young people with rare diseases.

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Five-year-old Flavia suffers from a severe, rare form of epilepsy. But instead of crying about the past, we are happy for her when she laughs.

Disabilities in children are a difficult topic for many people. Especially when it affects them personally. This is also the case for the Häsler-Wyss family from Aarau. Why us? Why our Flavia? These are questions that the family have often asked themselves.

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Malea is eleven years old and almost always happy and content. Not unusual so far - and yet the girl is different from children her age: Malea is affected by Prader-Willi syndrome, which occurs on average in one in 16,000 newborns. A visit to the Sonderegger family in Wangen bei Olten.

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Melanie Spescha did everything herself: she drew the pictures in her book, wrote the story and designed and tried out the craft and game instructions. Only the cover was designed by a professional and the photos were taken by her father. The result is an appealing interactive children's book about friendship and disability entitled "No one is too small to be a special friend". It took the 27-year-old just eight months to complete her passion project - alongside a 100% job, as she explains: 'Sometimes I worked on it late into the night and had to be back at work early in the morning. Fortunately, her boyfriend and family were very supportive.

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Rare Disease Day has been taking place for more than ten years. The day of action is also an opportunity for parents in Graubünden. One family explains why.

Around 350,000 children in Switzerland suffer from a rare disease. One of them is Leandro from Chur, who will soon be three years old. He has infantile hypophosphatasia, or HPP for short, a very rare, genetic metabolic disorder. But what does it actually mean to have a child with such a rare disease and how do those affected feel on the campaign day?

Leandro's mother, Manuela Göhler, answers these questions in an interview with Radio Südostschweiz.

Link Radio interview part 1

Link Radio interview part 2

According to estimates, around 200 people in Switzerland are affected by this disease. The skin of those affected is extremely vulnerable. Even the slightest touch leads to blisters and painful wounds. The mucous membranes and organs are also affected, depending on the course of the disease. How does everyday life go? Are there still moments of happiness? Telebasel visited Sevin at home - and met a young, lively and strong woman.

Eli gets off the school bus on Monday afternoon, which drops him off right outside his home in Veltheim. His mother Sabine Bachmann takes him into the kitchen, where the five-year-old takes all the muesli packets out of the cupboard, only to eat the same kind every time. Normal everyday life as in many families, but different because Eli is disabled. He was diagnosed early with autism and Brunner syndrome, a genetic metabolic disorder that, as far as is known, affects no one else in Switzerland.

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Many rare diseases begin in childhood. That's why the RADIO TOP theme days on rare diseases from February 28 to March 2 will focus on children.

On Monday, Manuela Stier, founder and managing director of the Association for the Support of Children with Rare Diseases, explains how the association came about and her experiences with affected families.

Link Radio interview with Manuela Stier part 1

Link Radio interview with Manuela Stier part 2

Link Radio interview with Manuela Stier part 3

Many rare diseases begin in childhood. That's why the RADIO TOP theme days on rare diseases from February 28 to March 2 will focus on children.

Melanie Spescha has written the children's book "Keiner zu klein ein besonderer Freund zu sein". Her aim is to contribute to the inclusion of children with rare diseases. She will also have her say on Monday.

Link Radio interview with Melanie Spescha part 1

Link Radio interview with Melanie Spescha part 2

Many rare diseases begin in childhood. That's why the RADIO TOP theme days on rare diseases from February 28 to March 2 will focus on children.

Jürgen and Melanie are the parents of two daughters, Kim and Amy. Amy, aged 8, has a mental developmental delay and physical impairments. She is very small for her age. She also has a hole in her heart. However, her illness has not (yet) been diagnosed. On Tuesday, her parents describe how they deal with their daughter Amy and about not having a name for the disease.

Link Radio interview with Amy's parents part 1

Link Radio interview with Amy's parents part 2

Link Radio interview with Amy's parents part 3

Link Radio interview with Amy's parents part 4

Link Radio interview with Amy's parents part 5

Many rare diseases begin in childhood. That's why the RADIO TOP theme days on rare diseases from February 28 to March 2 will focus on children.

On Wednesday, Elisabeth will share her story with us. Elisabeth and her husband Jonathan have two sons: Philipp and Tobias. Philipp is the second-born, very independent and determined. The 10-year-old Tobias has the rare disease "Noonan syndrome", which was only diagnosed in 2019. This disease is characterized by developmental disorders, short stature and typical facial features such as drooping eyelids and low-set ears.

Link Radio interview with Tobias' parents part 1

Link Radio interview with Tobias' parents part 2

Link Radio interview with Tobias Eltern part 3

Link Radio interview with Tobias Eltern part 4

Link Radio interview with Tobias Eltern part 5

Mom, put your socks on, says Emma to her mother Melanie. The three-and-a-half-year-old wants to go for a walk. But it takes a few attempts before Emma is finally outside in the fresh air with her mommy and her five-month-old sister. The reason is the socks. The comfortable ones without seams are in the wash. All other socks pinch Emma's feet because her skin is very sensitive and not very elastic, explains Melanie, who doesn't want her surname and place of residence in Limmat to appear in the newspaper.

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Marisa is the mother of four children, her youngest son suffers from sepsis encephalopathy with cortex edema and Patric's daughter is affected by the rare genetic defect CDKL5 and is severely disabled. Both know the psychosocial challenges between feelings of guilt, hopelessness, excessive demands and anger, but also confidence, happiness and joie de vivre. Manuela Stier is the founder and managing director of the Association for the Support of Children with Rare Diseases and is committed to the concerns of affected families.

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Around 350,000 children and young people throughout Switzerland are affected by a rare disease. This is an immense number, especially when you consider that many of the families affected share a common fate: they find themselves in a jungle of diagnostic confusion, helplessness on the part of the medical profession, a lack of information and insufficient coordination within the treatment chain. They are confronted with legal and administrative problems that they cannot solve on their own, but for which often no one feels responsible. In short, they feel helpless and alone; there are currently far too few competent contact points. The consequences of this are social isolation, psychosocial suffering and socio-economic consequences. At the same time, the affected families find themselves in a grieving process that they did not expect. Grief over the fact that their beloved child will not lead a normal life, that everyday life will look different than they had hoped.

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