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Events for September 24, 2021

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Gemeinsam für Selten – Together for the Rare

February 28, 2021 - September 25, 2021

Together with the Vita Club Salzburg we are going into the second round again this year, we will show you what you can do in the home office, but we all hope that we can slowly do a joint training again, which we miss our contacts despite increased Safety requirement. Often times, this kind of Read more >

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Awareness for medical issues by Adrenal patients!

February 28, 2021 - December 31, 2021

Bijnierpatienten in Nederland en Europa ervaren vaak problemen, bij het tijdig en juist diagnositiceren van hun aandoeningen/ziekten.Door het platform: ENDO-ERN (European Reference Network on Rare Endocrine Conditions) is het mogelijk gemaakt, om de casuistieken van deze patienten op internationaal niveau te laten bespreken, samen met de beschikbare specialisten, binnen heel Europa. Samen bewustzijn (awareness) creeren voor de problematiek, waar Bijnierpatienten Read more >

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Sällsynta dagen – Ta del av fakta, livsberättelser, intervjuer och musik, var du än är!

February 28, 2021 - February 28, 2022

Sällsynta dagen – vad är det?Vad innebär det att leva med ett sällsynt hälsotillstånd?Varför är det viktigt att få en orsaksdiagnos?Hur har 2020 års nobelpris för gensaxen CRISPR-Cas9 möjliggjort genterapi för svårt sjuka personer?Var kan man finna information och stöd när man möter en person med en sällsynt diagnos?Den sista februari varje år, i år Read more >

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20 years of care for butterfly children

February 28, 2021 - December 31, 2021

On the Rare Diseases Day 2021 we will start our celebration of the 20's anywersary of the EB Centre Czech Republic. The centre was established in 2001 in Brno (the second largest city of Czech Republic) by Hana Bučková, MD - head of departement of childrens dermatology in University hospital Brno. Nowadays there are 30 medical Read more >

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Telehealth Awareness Week

September 19, 2021 - September 25, 2021

The National Organization for Rare Disorders (NORD) is proud to support the inaugural Telehealth Awareness Week presented by the American Telemedicine Association! During the COVID-19 public health emergency, telehealth has played a critical role in providing safe, quality care to patients and families across the country. Taking place September 19-25, 2021, Telehealth Awareness Week will Read more >

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