Rare Disease Awareness Month - February 2025
There are more than 7000 different rare diseases affecting 300 million of the global population. That’s the same amount of people as the population of the 3rd largest country in the world.
Rare Diseases present a unique problem to global healthcare, and this is because they are little known, hard to diagnose, and there are next to no treatments available for them. More often than not, people affected with rare diseases suffer in silence, going from one doctor to another, without ever finding the help that they need.
Rare Disease Awareness month and International Rare Disease Day aim to highlight these global challenges and help people affected with rare diseases to find better recognition, make better connections, and encourage new interest and research to provide better care.
At the EI Cure Project in Switzerland, we have been planning an exciting program for Rare Disease Awareness Month since September 2024! As EI Cure Project Founder and as a newly appointed 10th Grade Rare Diseases Teacher, I hope to teach and inspire, encourage my students and their peers to show support, and help everyone at our school to have a huge amount of FUN! All in the name of Rare Disease Awareness Month, 2025!
Rare Disease Awareness
We kick off our Rare Disease Awareness Campaign with a series of educational assemblies for Elementary School, Middle School, and High School students. We will explain what a rare disease is, what causes them, and how rare diseases can cause a number of social challenges because of how we usually respond to visible and physical differences.
Students will also have the opportunity to show their support with a dress-down day in which they are invited to wear bright colours and fundraise by donating a small amount for the excitement of not having to wear their school uniform for a day.
EI Cure Project Reps For Rare Challenge
Last year in 2024, Tom Lill and I banded together with a group of our amazingly talented friends to create the Reps For Rare Challenge, a global challenge to raise awareness of our very small charity with our very BIG mission. The Reps For Rare Challenge was performed thousands of times over, by members of the EI community and their friends, family, and colleagues, all as a big show of support for everyone in the world affected by 1 in 300,000 rare disabling skin disorder, Epidermolytic Ichthyosis.
The aim of the challenge is to perform 300,000 reps, a target designed to represent the prevalence of Epidermolytic Ichthyosis.
This year, we are planning an even bigger series of challenges, and the whole of our children’s school (And their parents!), from Pre-K to 12th grade, will have the chance to show their support for the EI Cure Project.
If you would like to get involved with the Reps For Rare Challenge, please check out our instructional video to help guide you, plan your event, and then don’t forget to tell us all about it so that your Reps are counted towards our target!
If you’d like to see something that will inspire you to join us for the Reps For Rare Challenge, please look no further than this fantastic and uplifting compilation from last years events. Here you will see communities big and small banding together to support the EI community.
It is simply impossible to watch this without a smile on your face…so please enjoy, and be inspired!
RARE GENERATION - Community Concert & Aperitivo
On the evening of International Rare Disease Day (Friday, February 28, 19:00-21:00), I am so very proud to present the pinnacle of Rare Disease Awareness Month with a fantastic Community Concert Fundraiser and Aperitivo featuring the newly formed band, Rare Generation.
Rare Generation is a super band composed of a group of our amazingly talented performing arts teachers alongside TASIS parents and alumni who are banding together to raise funds for the EI Cure Project. They will be joined by the High School Choir, a 50-strong group of talented students, alongside a whole troop of Elementary School dance students and volunteers from the audience.
All these events have taken a great deal of planning, and we cannot wait to feel the support of our amazing community with this very important mission. Our aim for the month, is to get much closer to meeting our target of raising enough money to fund more research projects for our next round of grants in 2026. We want to raise CHF 150,000 in order to support either a 2-year postdoctoral research project, or a 3-year PhD scholarship.
It would be so wonderful for an educational institution as bright as TASIS to be able to support research at the very forefront of medical science today. Thank you so much for your kind consideration.