Rare disease day 2023

27 Feb 2023

Rare Disease Day invites everyone, as individuals or families, healthcare professionals or policy makers, educators or industry representatives to raise awareness of the range of rare diseases and of the urgent need to address inequalities.

Coordinated by EURORDIS and supported by 65+ national alliance patient organisation partners, Rare Disease Day is a global effort to change the experiences of those affected by a rare disease - which is estimated to account for 1 in 17 people across the world (Rare Disease UK).

The inequalities facing those affected by a rare disease might include public and societal awareness and support, professional understanding to inform early and accurate diagnosis, research and development for treatments or prevention, access to services and support, vocational and financial aid (Neurological Alliance: Out of the Shadows, 2020).

As an educator, Neurology Academy is committed to our part in addressing these inequalities and are working to expand our education out to rarer neurological conditions, including spinal muscular atrophy, myasthenia gravis and motor neurone disease, as well as championing less-understood conditions like Lewy body dementia.

This Rare Disease Day, you are invited to 'share your colours' using their downloadable resourcesto raise awareness of rare diseases, and show your support for those affected by them, and to #LightUpForRare at 7pm local time to create a global chain of lights.

Available education

Find out more about spinal muscular atrophy through the latest care pathways for children and adults, our short animation on red flags for non specialists, or watch our introductory webinar.

Our MG MasterClass for myasthenia gravis was newly launched this year and is already fully booked. More education is planned in this area, including webinars and virtual courses.

Motor neurone disease (MND) also known as amyotrophic lateral sclerosis (ALS), is currently one of the conditions addressed in our Palliative Care MasterClass, and later this year we are holding dedicated webinars for the condition.

EURORDIS, the organisation behind Rare Disease Day, have an online webinar and several classroom resources aimed at talking about rare disease with young children.

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