Rare Disease Day 2024 Update
by Despina Dinca

NA Advocacy post during social media takeover of Rare Revolution Magazine on Rare Disease Day, 29 February 2024. NA mission: supporting patients; improving diagnosis time; accelerating the path towards therapies; discovering novel relevant research. We spoke about our plans for the Rare Disease Day (RDD) on 29 February 2024 In our issue 44 featured article. We’re pleased to report we covered everything we planned for and more!


NA Advocacy & NA Advocacy USA created a special week-long campaign on all our social media channels. The patient stories we shared were by far the most popular features, and we hit a record number of interactions on Facebook, LinkedIn and Instagram!


We were also given the opportunity to take over the social media channels of Rare Revolution Magazine on 29 February. This brought us some new followers interested in what we do!


We also participated in numerous events held on or around the day such as:


It is important to collaborate continuously with other rare disease-oriented organisations, especially umbrella ones who help make our voice heard. As small charities for rare conditions, individually we may not have the resources to power up big campaigns on our own, but uniting our efforts we become stronger, more heard and better known.


RDD was created in 2008, and it takes place every year on 28 February (or 29 in leap years - the rarest day of the year). RDD was set up and is coordinated by Eurordis and 65+ national alliance patient organisation partners. RDD provides an energy and focal point that enables rare diseases advocacy work to progress on the local, national and international levels. (Credit: www.rarediseaseday.org )


As you, our readers, come from all over the world, please don’t hesitate to let us know if we missed anything relevant happening in your country / region. You can drop Despina an email at despinadinca@naadvocacy.org or approach us on any of our social media channels.



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