Sixth Formers Shine a Light on Rare Disease Day

Rare Disease Day is a national day of recognition for those who suffer from uncommon diseases and illnesses. The day aims to break the stigma surrounding these illnesses and to show support for those who suffer, creating a safe place whilst raising awareness.

Sofia has worked exceptionally hard to organise an acknowledgement of the day within school, encouraging fellow Sixth Formers to attend school dressed in bright clothes and to collect a complimentary glow stick to ‘light up’ the cause by creating a chain of lights for a small donation. All funds will be donated to AMEND, a charity which supports those with multiple endocrine neoplasia (MEN) syndromes types 1, 2, and 3, medullary thyroid cancer (MTC), and Phaeochromocytoma and Paraganglioma (PPGL) syndromes.

Sofia commented: “Rare disease day is important to me because I think when someone gets diagnosed with a rare disease you are just seen as disabled. I don't think people fully understand, unless they live with one themselves, the amount a rare disease can stop someone from taking part in everyday activities.”

I think it is important to spread awareness because after diagnosis, the patient and the family go through so much mentally and physically. People with rare diseases are often unable to be cured and life can be very difficult. People with rare diseases often face discrimination in education and the workplace, difficulty with social care, health and diagnosis.

I think it is important for people to know that some rare diseases aren't visible and to be more aware of what someone could be going through even if they can't see. I feel strongly about spreading awareness because I myself struggle with a rare disease. I don't think this day is well publicised with everyone and I want to change that!

Tips and resources for those wanting to participate:

1. Speak out and share on social media - This could be sharing an image from the Rare Disease Day accounts or posting a picture with some of the downloadable posters/filters on the Rare Disease Day website. 

2. Light up for Rare - This is a global event where people can light their home with the Rare Disease Day colours and post a picture on social media showing their support. It is called the Global Chain of Lights 

3. Get Creative - Make a window display, paint or draw something colourful and then share it on social media. 

4. Make sure to show support to friends and families - for some people this won't impact them at all however, it could be that someone in their class is having a tough time because of a rare disease. This could be just being there for them to talk to or to spend time together. 

5. Educating - Information about the day is readily available online. The more someone knows, the better they can support and spread awareness.  Rare Disease Day 2023

6. Support charities that aim to help people with rare diseases - more funding and awareness of them means more work can be put in to support the patients and their families.