Monthly Archives: February 2019

Four things I learned from an individual with fibrous dysplasia

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As it does every year, Orphanet Journal of Rare Diseases is proud to partner with Findacure in its Student Voice essay contest. The overall winner will be published in the journal on Rare Disease Day, and we are proud to present the other finalists here. For this entry, undergraduate and masters students from around the world were asked to use a case study to demonstrate what future doctors can learn from patients with rare diseases. In this blog, Maisha Umama takes us through her experience and what she learned from her time communicating with a patient with fibrous dysplasia.

Health Medicine

Rare Disease Day Quiz 2019

quiz

Rare Disease Day occurs annually, on the last day of February. It is an awareness day meant to increase cognizance and spark conversation among decision-makers, the public, and patients about rare diseases and the effects they have on lives. Take our quiz to see how much you know about rare diseases and to discover some things you might not know, from Orphanet Journal of Rare Diseases (OJRD) and other BMC titles.

Health Medicine

‘When a mother flees from her newborn’ – comparing Harlequin Ichthyosis cases in Nigeria and the United Kingdom.

Ultrasound detail

As it does every year, Orphanet Journal of Rare Diseases partnered with Findacure in its Student Voice essay contest. The overall winner will be published in the journal on Rare Disease Day, and we are proud to present the other finalists here. For this entry, undergraduate and masters students from around the world were asked to compare and contrast rare disease healthcare provision of two countries of their choice. In this blog, Naomi Morka compares pre-natal diagnosis and management of harlequin ichthyosis between a developed and a developing nation.

Health Medicine

What can future doctors learn from patients with rare diseases?

General practitioner doing blood test

As it does every year, Orphanet Journal of Rare Diseases partnered with Findacure in its Student Voice essay contest. The overall winner will be published in the journal on Rare Disease Day, and we are proud to present the other finalists here. For this entry, undergraduate and masters students from around the world were asked to use a case study to demonstrate what future doctors can learn from patients with rare diseases. In this blog, Timothy Badcock describes his experience in helping a patient with X-linked agammaglobulinaemia.

Health Medicine

Exergaming to improve complex motor-cognitive performances in patients suffering from dementia

Computer game competition. Gaming concept. White and black joystick isolated on blue background, 3D rendering

Exergaming, or “exercise-gaming,” is an exciting new therapy option for patients with dementia. In a recently published study in Journal of NeuroEngineering and Rehabilitation, Christian Werner and colleagues attempt to identify predictors of early training response and establish the necessary time course for improved motor-cognitive performance in patients with dementia.

Medicine