Its Rare Disease Day – Lets Talk Language.

Rare Disease Day is an important international awareness day that takes place every year on 28th February (or for leap years on 29th February). This date was chosen because 29th February is the rarest day of the year.

Its a great opportunity to raise awareness of rare genetic conditions which is essential for improving early diagnosis, treatment, access to support, research, advocacy, and ultimately, the quality of life. But, can we talk language? Here at The Sandcastle Trust we have never been comfortable using the term ‘rare disease.’ Many of our families have told us they don’t like it – it has negative connotations and is not a term they identify with. We therefore prefer to use ‘living with a rare condition’ believing it is much more inclusive.

Many of the charities/support groups in our community have now adopted the term ‘rare disease’ as it is one used by healthcare professionals, policy makers, researchers and pharmaceutical companies.  Is this right or should it be the other way around, should they not adopt the term that we prefer?  We would love to know what you think about this.  Please enter one of the polls running on our social media pages or drop us an email at