“RTL – Wir helfen Kindern” – Project Patin Esther Schweins
“Wir müssen more Aufmerksamkeit for Seltene Erkrankungen purchase!”
Project Patin Esther Schweins followed Lia (3), who was in the Rett-Syndrom school, and her family. l.: Lias Bruder Benjamin (5)
RTL/photo alliance/Oliver Diezte
November 18, 2024 um 07:11 Uhr
When the illness becomes zum Weltuntergang
“If the diagnosis of Rett Syndrome is nannte, war is who a Weltuntergang,” remembers Karin, the mother of little Lia. For a year, the family has put an end to wisdom, because it is worth going differently than other children. Lia cannot sit another person alone, but no longer talk and no longer talk. Esther Schweins advocates project patination of “RTL – Wir helfen Kindern” Lia and her family. The schauspielerin is busy with my podcast „UNGLAUBLICH KRANK – Patients ohne Diagnose“ for more brand research for Seltene Erkrankungen and the Verbesserung der Hilfe for affected people. “A diagnosis for children with self-study is a mystery, a diagnosis can no longer be made. A diagnosis has been made through the use of healthy networks. First with a diagnosis of the man Anspruch auf die richtige Hilfe,” says Esther Schweins. “The Time of Diagnosis Finding is extremely unsatisfactory for everyone, a purer Albtraum. If you didn’t know anything, no matter how you look at it, you can’t know and you can’t erase everything, it wasn’t everything you needed. Damit Seltene Erkrankungen faster and covered, brauchen wir more Aufmerksamkeit darauf.“
More brand similarity for seltene Krankheiten ist boats
Esther Schweins will purchase more information about the existing selection of Seltenen at RTL-Spendenmarathon on November 21 and 22. The 54 year old will notice and express the care and concern in the difficult situation of affected families and children: “The diagnosis of a Seltenenerkrankung is first der Anfang. When the diagnosis is made, it is not major. A million fragments of woolen savory became: Welche Art van Hilfe can a man be a savory? Wer kann mir helfen? It is impossible to end the selection and self-service group. If the family is affected by writing the data, the inner part of the general system will be affected, it will not be solved at all.”
If you spend money on the long charities in the German economy, you can develop with the Verein ACHSE eV (Allianz Chronic Seltener Erkrankungen) bundesweit Unterstützerteams. The so-called ‘Zebra’ team has the best social security, but it is all possible to know the social and collective system. These teams can be affected by an optimal family and an individual through the control swing and the best support for the sick child ermöglichen.
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With the expenditure collected by the long-standing charities in the German companies, the Allianz Chronic Seltener activities can be carried out by the “Team Zebra” green. Zum “Team Zebra” has social security, but the fact is that the social and collective system is within the system. With this expertise and more time, the “Team Zebra” can help families in other difficult situations optimally and individually by supporting their child’s health and providing the best support for their child’s health. Damit became a great support for personal time and care, which could then be spent with children, with family, together with children.
Background
RTL/photo alliance/Oliver Diezte
Background of Theme Seltene Erkrankungen
In the European Union, an Erkrankung was sold as selten, but no more than 5 out of 10,000 people were affected. If there are more than 6,000 unused Seltene Erkrankungen (SE)-gibt, it is Gesamtzahl der Betroffen Trotz der Seltenheit der einzelnen Erkrankung hoch. All in Germany live according to the law of four million people with a positive attitude, in the EU together there are men of approximately 30 million people affected.
The 70 percent of the Seltenen erkrankungen have had a certain Ursache, so that the überproportional children and newborns are affected. Seltene Erkrankungen verlaufen chronic fortschreitend, often with schwerwiegenden körperlichen and geistigen Einschränkungen einher and they are no better. This can lead to Rett-Angelman, Williams-Beuren syndrome, ALS or mukoviszidosis.
Deutschlandweit is now a small amount of experts and experts, man with the jewelry Seltenen Erkrankung versorgen können and the Erkrankung weiter erforschen. If the path to management and management is not always visible. All people can be affected if those affected by their investigation into all cases of illness are affected and the diagnosis is made as the first German verzögert.
The child with the Seltener experience is often aggravated: we are still not at the diagnosis after the diagnosis for the child, but it is irreversible that it has become irreversible and can be. If you continue, while your children have not even done an examination and a clinical clinic, it is clear that they know that this is known or that the desired Soul of Diagnosis (jemals) is erreicht. A long, long journey and a leading Odyssey through the beginnings of the healthy lifestyle. If you want to make a different diagnosis, it is that you can no longer learn from the healthy and social system. If the diagnosis begins at the end of the year, you may find yourself in a rut. Problems and problems in the camp can be solved by optimizing the Alltag. The choice for the problem, if the Erkrankung meist nirgends can be, you will verstehen and damit auch nach außen gegenüber Institutionen, Ämtern and even the Krankenkassen or der Ärzteschaft is often highly erklärungsbedürftig. Most of the Seltenen experiences are versatile in general, but a fachleuten will never be possible again or there is no information whatsoever about this information. Erklärungsbedürftige Erkrankungen are at the Seltenen Erkrankungen die Norm.
With the publications that become the interdisciplinary sister ammengesetzte (medical, medical, legal, administrative) “Team Zebra”, the situation of children/jugendlichen with Seltenen Erkrankungen and their family-oriented situation is determined. Neben der Beratung (nächste Schritte, more possible Anlaufstellen) with Hilfe and Unterstützung bei the unterschiedlichen Herausforderungen geistetet, bis concrete Hilfen, auf the families Anspruch haben, auch lich beihnen ankommen. It is wise to help the team as a rule with the family, encouraging everything and strengthening the power of the family and making it resilient to special provisions that Art. The “Team Zebra” sees as Begleiter, Stellvertreter for the Eltern and manages the journey through the complexity of the collective and social systems and with Rat and Tat holds its page and stops the faded sister. Damit became a great undertaking for the personal time and the care, which is then carried out in my children, in the family, the family treatments.
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Stiftung RTL – Wir helfen Kindern eV & der RTL-Spendenmarathon
Project Patin Esther Schweins followed Lia (3), who had Rett Syndrome, and started her Reit therapy.
RTL/photo alliance/Oliver Diezte
From 1996, RTL started for non-leading children in Germany and der gezen Weltliche costs for personal, production and production, the rund um the “Stiftung RTL – Wir helfen Kindern eV” and the dazugehörenden RTL-Spendenmarathon entstehen, trägt RTL Deutschland. So fly your penny der gesammelten Gelder ohne Abzug in ausgewählte Kinderhilfsprojekte. While the RTL foundation and the RTL-Spendenmarathon broadcast the longest charity channel on German TV. Jedes Jahr was founded during the German Zentralinstitut voor Soziale Fragen (DZI) and started in 2002 with the DZI-Spendensiegel. Over the years, more than 287 million euros could be collected. The “Stiftung RTL – Wir helfen Kindern eV” has developed their children’s education projects. Hunderttausenden Non leading children in Germany and all the world were so nachhaltig geholfen.
Die ACHSE – Strong Stimme für Menschen mit Seltenen Erkrankungen
Die Sonnenglas GmbH was produced and produced in 2013 by Solarlaternen and modules in its own factory in Johannesburg, South Africa. Local production made it possible to establish 65 companies with Fair Trade standards in a region that is affected by higher labor loss, especially for a young person. Gegründet wurde die Sonnenglas GmbH von Stefan Neubig. All information about the social and social consequences of the Unternehmens can be found at sonnenglas.net. Under the motto “We Serve”, Lions helps to develop where Unterstützung is created. With 1.4 million members in 200 countries, Lion Clubs International (LCI) is the smallest club movement in the world. Derzeit engagieren sich in Deutschland rund 52,000 Mitglieder in über 1,500 Clubs voor de Gemeinschaft und für Menschen in Not.Wir sind die Allianz Chronic Seltener Erkrankungen (ACHSE) eV, Stimme von 4 Millionen Betroffen Menschen und deren Angehörigen. Seit 20 Years of bundling with know-how and heritage knowledge, bringing our expertise into Medizin, Wissenschaft and Forschung ein, mobilizing Politik and Krankenkassen. Hilfesuchenden beets are a lonely animation – competent and free of charge. We know confident organizations and powerful companies on the common ground on this page. We have great children and happy experiences with happy experiences that give us the chance to live a better life. Unsere Schirmherrin is Eva Luise Köhler. “Affected patients urgently need more treatment, more therapy can be a good diagnosis, treatment and treatment. They would like to know more about their health and well-being.” Geske Wehr, Vorsitzende der ACHSE and Mutter were both affected by Ichthyosis. www.achse-online.de