Rare Disease

Views & Analysis

Rare Youth Project: Can you empower the next generation of r...

The next generation of rare disease advocates need a little support in getting their voices heard as part of the Rare Youth Project.

Views & Analysis

Patient centricity is about delivering with, not for, patien...

Patient centricity starts with communication and collaboration and these are the only ways to ensure people living with rare diseases like scleroderma will be able to access potentially transfo

Views & Analysis

Balancing expectations: An unmet need in the orphan disease ...

There are between 6000 and 8000 rare diseases in the world, and one in ten people in Europe and the US have a rare disease; 75% of rare diseases affect children, and 30% of rare disease patients di

Views & Analysis

Imparare a convivere con la LHON

Ogni paziente affronta il viaggio della vita a modo proprio, imparando a conoscere la malattia al meglio delle proprie possibilità e attraverso gli strumenti a disposizione.

Views & Analysis

Raising awareness about rare diseases

A family tragedy has prompted Kay Parkinson, founder of the rare disease charity Alstrom Syndrome UK, to create a conference encouraging joined-up thinking to help improve treatments, care and serv

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