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Information Letter.pdf

CZ-SLOS-Family-Letter.pdf
Preview of Information Letter
🔗 Source: metab.ern-net.eu
📊 Size: 203 KB
👤 Author: Karin Mossler
⬇️ Downloads: 173

Summary

Nový projekt pro osoby se Smith-Lemli-Opitzovým syndromem (SLOS) a jejich rodiny má za cíl zlepšit poradenství a rozvíjet terapie. Projekt je součástí evropské referenční sítě pro dědičné metabolické poruchy (MetabERN) a má za cíl shromáždit více dat o tomto komplexním metabolickém onemocnění. Projekt vede Dr. Dorothea Haas z Fakultní nemocnice v Heidelbergu a bude využíván evropský registr dědičných metabolických poruch (U-IMD) jako platforma studie. Rodiny jsou vyzvány k účasti v průzkumu, aby poskytly informace o příznacích a aspektech péče o pacienty se SLOS.

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Description

Nový projekt pro osoby se Smith-Lemli-Opitzovým syndromem (SLOS) a jejich rodiny má za cíl zlepšit poradenství a rozvíjet terapie.

Technical Information

  • File Format: PDF
  • File Size: 203 KB
  • Pages: 2
  • Language: PT
  • Author: Karin Mossler
  • Total Downloads: 173
  • Last Updated: 1 week ago

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