Living with a Rare Disease | www.eurordis.org
Living with a Rare Disease
Most rare diseases have no cure, so the art of living with a rare disease is an ongoing learning experience for patients and families. Read and share stories of hope, sorrow, achievement and ordinary life of these extraordinary people.
Liliana and MP were born 27 years apart. Their stories show us the progress and development achieved in nearly 30 years.
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Paul and brothers Sebastien and Antoine have Fragile-X syndrome. Two mothers share their experience.
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Developing parity of treatment in Europe for Spina Bifida and Hydrocephalus
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Advancing research: Just one small step can make a big difference
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Acting at European level to gather families, networks, provide mutual support and stimulate research.
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Begun in late October 2009, the “Find the other 150” campaign is a global effort to find all children...
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Jane Villemoes tells us about daily life, the joys, the battles won and those lost while bringing up Cecilie, her 12 year old daughter diagnosed with Angelman syndrome.
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Diagnosis of Alkaptonuria (AKU) can be possible in infancy but is often delayed until adulthood long after symptoms manifest
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Philippe Grammont, founder and Vice-President of the French Association for Strümpell-Lorrain tells his story
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Véronique Vrinds was not just taller than her friends at school; she was also a bit more awkward and much more prone to sprains. While growing up, she developed back...
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Isolation is one of the many issues faced by rare disease patients all over the world. In Australia, where 20 million people live in a territory roughly the size of Europe,...
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Chromosomes hold the genetic keys to all of the body's functions; disorders occur when there are errors on any of the body's 23 pairs of chromosomes.
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Although Michael Griffith was developing Retinitis Pigmentosa (RP) in 1983, it was not his own condition that prompted him to establish Fighting Blindness (FB).
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Liesbeth Laan, a school nurse based in The Hague, Netherlands, had a smooth pregnancy and delivered Joas at home in July 2006. But for the first six months of his life, the...
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Florence Simonis summarises accurately, if a bit sadly, the life of a rare disease patient. “Every day is a kind of fight against the pain, the fatigue, the invisible...
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Osteogenesis imperfecta (OI) is a group of rare genetic disorders that mainly affect the bones.
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In 1983 Liz Blows was diagnosed with diabetes. She adjusted to a regime of dietary control and regular injections and got on with her life.
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Linda R. tells us about her daughter’s life with Narcolepsy, a rare disorder that causes excessive sleepiness and cataplexy
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At the age of ten, Dietmar was causing himself so many injuries by falling down that we asked the doctor for a brain scan.
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