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Amyotrophic lateral sclerosis: a patient’s journey «It was a sunny Sunday morning in the middle of September. Amy was playing in the local playground under the watchful eye of her parents, trying to

The main aim of the WDO Member Meeting was to gather patient organizations, scientists, researchers and experts working in the Duchenne field to share and build on each other’s knowledge to create

Rare diseases affect less than 5 of every 10,000 people, with 80% being children. Share4Rare is born from the need to connect and join patients with rare diseases from all over the world. Our greatest

What is RareHacks? RareHacks is a hackathon event that brings you the opportunity to apply data science tools, including machine learning and natural language processing algorithms, to a real

European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe who aim to tackle complex or rare diseases and conditions. There are 24 ERNs involving 25 European

Lucas was born with some birthmarks on his skin. These giant marks appear due to a defect in the melanocytes during the embryonic development. These cells are responsible for producing melanin, the

What is DMD? DMD is a disorder that mainly affects boys and is characterized by progressive muscular degeneration and atrophy. It is caused by mutations in the gene encoding dystrophin, a protein that

Investigations Genetic testing will confirm the diagnosis of Duchenne and Becker and show the exact mutation in the gene. Often the first test is a blood test measuring CK (creatine kinase), which is

What is Duchenne- and Becker Muscular Dystrophy? Duchenne and Becker MD are both X-linked recessive disorders. Both diseases are caused by mutations in the dystrophin gene, which encodes the protein

When your child is diagnosed with a rare disease — or he/she is still undiagnosed —parenthood becomes harder than expected. You face complete uncertainty as you probably know nothing about that

MPNE, the Melanoma Patient Network Europe, is a network of melanoma patients and carers that connects people across language barriers in Europe to make sure correct information and support reaches any

Just as fake news seems to become an inevitable grudge whenever you look for news or information online, fake science is on the rise too, and it stirs up the rare disease community. Articles that are