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Huntington, Diamo Colore alle Nostre Voci! - Giornata Mondiale Malattie Rare 2021

22/02/2021

LIRH Foundation participates in World Rare Disease Day 2021. The voices of patients and caregivers will take on color through their testimonies: 

  • what does it mean to have a rare disease?
  • what does it mean to have Huntington's disease?
  • if you were the minister of health, what would you do?

The protagonists will answer these questions. Starting from today, February 22, until Sunday, February 28, World Rare Disease Day. 

New treatments for the cure of Huntington's disease: : launch of the telemedicine European project.

European EHealth Care Model for Rare Neurodegenerative Diseases (Health-RND) is a three-year telemedicine project funded under the European JPND (Joint Programme - Neurodegenerative Disease Research) to six research centers in six different European countries: Charles University of Prague for the Czech Republic , Bloomfield Hospital for Ireland, IRCCS Casa Sollievo della Sofferenza for Italy, Leiden University Medical Center and Huntington Center Overduin for Holland, ULM University for Germany, Galen Research Institute of Manchester to the United Kingdom.

What do I need to do to undergo the genetic testing?

Hello. What do I have to do to take the test for Huntington’s Chorea? Do I need to book it or can I just show up at your center? Are there any special precautions before the test? For example, should I go on an empty stomach?
Thank you.
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