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Quality of life
Surgery and rehabilitation
Injuries and wounds
02 April 2019
Let’s make rare extraordinary! Welcome to Share4Rare
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
27 March 2019
RareHacks: uniting experts to build the future of the rare disease community
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
Quality of life
25 March 2019
CPMS Platform for European Reference Networks (ERNs)
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
22 March 2019
Giant congenital melanocytic nevus - Causes and Consequences
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
20 March 2019
Preclinical study shows gene editing restores altered dystrophin levels in Duchenne
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
18 March 2019
Duchenne and Becker muscular dystrophy: Treatment & Research. Part II.
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
15 March 2019
Duchenne and Becker muscular dystrophy: types & causes. Part I.
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
08 March 2019
Share4Rare: helping to tackle problems faced by parents of children with rare diseases
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
06 March 2019
Melanoma - back at the Edge
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
05 March 2019
Share4Rare Webinar V: "How to Detect & Tackle Pseudoscience"
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
04 March 2019
Xeroderma pigmentosum, a journey against the sun
Xeroderma pigmentosum : a patient’s story «He was 3 years old when he was diagnosed with Xeroderma pigmentosum ». “Little Josh” , as his mother liked to call him, had been born in a small town near
28 February 2019
Rare Disease Day – Make your voice heard!
Rare Disease Day is an international event whose objective is to raise awareness, improve treatment access and provide visibility for individuals suffering from a rare disease. Originally established