International Rare Disease Day – 28 February

International Rare Disease Day is Thursday 28th February 2019 and the theme is: Bridging health and social care.

The focus is on bridging the gaps in the coordination between medical, social and support services in order to tackle the challenges that people living with a rare disease and their families around the world face every day.

For most people living with a rare disease, as well as their family members or carers, the reality of daily life can include any combination of the following: collecting and taking medicines, attending appointments, participating in physical therapy, using specialist equipment and accessing various social and community support services and respite care. Managing these care-related tasks alongside their usual daily activities such as work, school and leisure time can be challenging.

There are over 6,000 rare diseases that affect over 300 million people worldwide. At the Perron Institute, we conduct research on rare diseases such as Duchenne muscular dystrophy, spinal muscular atrophy and myositis.

Rare Disease Day 2019 is an opportunity to be part of a global call on policy makers, healthcare professionals, and care services to better coordinate all aspects of care for people living with a rare disease.

#ShowYourRare is the interactive social media campaign for Rare Disease Day. You can get involved during the month of February by painting your face and sharing a photo using the hashtag #ShowYourRare in solidarity with people across the world who are living with a rare disease.

Also see what is happening in your local area to support this important day.

For more information see: