#rare-genetic-disorder
#rare-genetic-disorder

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I'm 12 and had a heart transplant because of a disease that affects only 13 people'

An 11-year-old boy received a heart transplant after waking from a six-week coma caused by a rare LMNA gene-related muscular dystrophy affecting only approximately 13 people worldwide.

fromwww.theguardian.com

2 weeks ago

Nihal, Child of the Moon: how she lives with extreme UV sensitivity

Rare Disease Day, on 28 February, highlights the more than 6,100 conditions identified worldwide, including xeroderma pigmentosum (XP), a rare genetic disorder that affects just over 100 people in France. Those affected are often referred to as Children of the Moon, a name that reflects their extreme sensitivity to ultraviolet light.

France news

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#rare-genetic-disorder#rare-genetic-disorder

I'm 12 and had a heart transplant because of a disease that affects only 13 people'

Nihal, Child of the Moon: how she lives with extreme UV sensitivity

#rare-genetic-disorder
#rare-genetic-disorder