Latest News

  • A little boy from Cheam has been diagnosed with a condition so rare that, since its discovery in 1965, fewer than 25 cases have been recorded worldwide. Alfie Mumford, four, suffers from the complex Gillespie syndrome, characterised by partial aniridia, meaning that part of his iris is missing and his...
  • Margaret Flynn is still waiting for a lung transplant. Now, the Ladysmith resident has been on the current waiting list longer than anyone else. “It’s a rare match,” said Flynn, who has O negative blood as well as certain anti bodies in the blood, making her difficult to match to...
  • Christine Falleti has spent much of her life combating the crippling effects of cystic fibrosis (CF). Now 34, she is painfully aware that she’s approaching the age when most people with CF die. Two friends with the disease already have. But last year she took part in a test of...


Rare disease spotlight


"Mi empresa continúa su actividad y tengo que ir a trabajar,¿qué derechos tengo?,¿Mi empresa me puede obligar a salir e ir a mi centro de trabajo,¿Puedo negarme a ir a trabajar porque temo contagiarme por Covid-19?"
@FEDER_ONG reúne las respuestas aquí:

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The #bRED4Porphyria campaign aims to connect the whole porphyria community in these unsettling times… you’re not alone, lets share our videos/photos/stories, connect & have a little fun!

My week on Twitter 🎉: 3 Mentions, 16 Mention Reach. See yours with

My week on Twitter 🎉: 2 Mentions, 732 Mention Reach, 9 Likes, 1 Retweet, 59 Retweet Reach. See yours with

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