Cavernöst Angiom Sverige (CASE) is a non-profit organisation for patients with cavernous angioma (also known as cavernous malformations, CCM, and cavernoma). CASE is part of… Continue reading Cavernöst Angiom Sverige (CASE)
Results for "light up for rare"
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We are an alliance of healthcare and research professionals in the South West of England promoting genomic medicine services. We are here to support patients… Continue reading South West Genomic Medicine Service Alliance
GeNet , GEnetic NETwork, is an international association that embraces genetics in all its forms highlighting all its nuances. GeNet was founded by a team… Continue reading GeNet – GEnetic NETwork
The Canadian Association of Genetic Counsellors (CAGC) was formed in 1987 with the goal of promoting high standards of practice, facilitating and supporting professional growth… Continue reading Canadian Association of Genetic Counsellors
We are a charitable, non-profit organisation. We support the following causes, which are dear to us and which were important to Charles, such as: –… Continue reading Charlie’s Garden
ASPEN leads and advances the science and practice of clinical nutrition and metabolism and is dedicated to improving patient care. Founded in 1976, ASPEN is… Continue reading American Society for Parenteral and Enteral Nutrition (ASPEN)
Ethan (6), was born with the rare skin condition, epidermolysis bullosa (EB), his skin is as vulnerable as the wings of a butterfly and with… Continue reading Living with EB
Hi everyone, I was diagnosed with plastic bronchitis after a bronchoscopy to see what was happening in my lungs when coughing up these strange bronchial… Continue reading An unexpected journey, what now?
This video was taken on 28 of February 2021 just weeks before Saarah passed away. It was very a very difficult video because Saarah was… Continue reading Saarah’s life