Rare Disease Day is celebrated annually on the last day of February, falling on Friday, 28 February 2025. With over 300 million people worldwide living with one or more of 7000+ rare conditions, this year’s focus is on ‘More than you can imagine’, highlighting the vast number of rare diseases, the number of people affected by them and significant associated challenges which extend well beyond symptom management.
In preparation for TAMS’ social media ‘Rare Disease Day take-over’, we invite our members to share insights with those unaffected by rare diseases, helping them better understand how they can support, accommodate, and create a safer and more accepting world for those living with rare conditions.
If you or your child has mastocytosis, we welcome you to provide a response addressing up to three of the following (up to 150 words per answer):
- How can people help you feel seen?
- How can people accommodate you?
- How can people make you feel accepted?
- How can people help keep you safe in daily life or during a disease flare?
- Share an example of a time someone supported you in one of the above ways.
- How can people ensure that their support extends beyond Rare Disease Day?
Please also share your name, age, and region (e.g., Wollongong, NSW). And, if you’d like, a photo of yourself, a craft you’ve done, or your four-legged friend for us to share alongside your insights.
With your input, we look forward to amplifying the voices of those living with mastocytosis this Rare Disease Day and raising awareness for all MCADs, including mastocytosis, throughout the rest of the year!
If you have mastocytosis, please email your Rare Disease Day contributions to info@mastocytosis.org.au. Those with other MCADs are encouraged to fill out a patient profile.
