RARE Youth Revolution

Last up for Rare Disease Day is Ally. Her #RareDisease makes her feel...scared for the future. "Living with a rare disease can bring up many feelings, positive and negative- joy in community, strength, fear, sadness, grief; the list goes on. With the current political climate surrounding disability rights issues, I’m feeling scared for my future and others this Rare Disease Day as rights have the potential to be stripped away. Living with a progressive disease also makes me feel scared at times. While Rare Disease Day is a celebration, it’s important to acknowledge the hard things as well."

Our next #RareDiseaseDay comes from anonymous, who feels frustrated (sometimes) by his rare disease. It's important to remember that not everyone has to be a firece advocate—simply living life to the best of your abilities is powerful in itself!

Next up for our #RareDiseaseDay campaign is Dylan. His rare disease, #MDPSyndrome, makes him feel happy and unique. Keep telling your stories, Dylan and continue to be you!

Next up for Rare Disease Day is Pujitha. Her #RareDisease makes her feel...defiant. "My name is Pujitha, and I’m just a regular young adult—I love to bake, cook, read, draw, spend time with my friends and family, and nerd out about science! But living with a rare disease like #NF2 is anything but easy. Through my battles, I’ve learned to be resilient and stand my ground. I refuse to let NF2 define me—I’m a researcher, a dreamer, and a fighter. I chose the word defiant because I won’t let NF2 steer my ship. My journey doesn’t stop here—it perseveres. I will keep pushing, learning, and fighting for a future where rare diseases get the attention they deserve."

First up for Rare Disease Day is Noah. Despite his amazing smile, his #RareDisease makes him feel...sad. "This is Noah, a 3-year-old living in the USA. Noah has #PPA2, a rare #Mitochondrial disease that can result in sudden cardiac death. Noah had four cardiac arrests before the age of 18 months, and has an implantable cardioverter defibrillator (ICD). While Noah doesn’t quite understand the concept of having a rare disease, he does understand that he is special and different from other children his age. When asked how this makes him feel, he replied ‘sad’. Noah has frequent doctor visits and has been through more than most adults have, but he is strong and brave."

This is your last chance to get involved with our #RareDiseaseDay campaign. We want to know how YOU or someone close to you feels about living with a #RareDisease or condition. Email hello@rareyouthrevolution.com for more details or visit https://lnkd.in/eMnpF3mQ

Introducing our latest blog, Five minutes with...Linseigh Green! It’s a chance to get to know young influential people in RARE communities. Here, Linseigh discusses the lack of disability representation in the theatre and her experience with discrimination in the field. She also talks about the long-term outcomes of being a #NecrotisingEnterocolitis (#NEC) survivor and life from #FunctionalNeurologicalDisorder (#FND) Read the full blog at https://bit.ly/4aXV5ZK

Rare Disease Day is just around the corner! But what actually is it? Swipe to find out 👉 #RareDiseaseDay was created in 2008 by EURORDIS. By creating as much awareness and noise as possible, we can aim to improve the lives of people like us who live with rare diseases all around the world. There's still time to take part in our campaign!🚨Visit https://lnkd.in/eMnpF3mQ to get involved!

You've probably paid it forward without even realising it! And it's the most powerful tool in our RARE community. WHAT IS PAYING IT FORWARD? - The pay-it-forward effect, first described by Catherine Ryan Hyde, inspires a chain reaction, usually of kindness, but for us, of advocacy! SMALL EXAMPLES OF PAYING IT FORWARD: - Posting a storytime about your symptoms on social media is great, and is one of the best ways to advocate and reach around the world. - Volunteering with a charity for a small or large amount of time can be enough to make a difference in someones life. - Positively educating someone who may have pre-judged you or someone else based purely on a rare condition. Or, if you would like to tell your story in a blog, email us at hello@rareyouthrevolution!

Calling all young artists! Help CAPSS celebrate its 15-year anniversary! Submit your artwork for a chance to win a prize and see your work published in its special anniversary report. The theme is My Mental Health and Me, open to ages up to 11 and 12 to 17. The closing date is 31 January 2025. For more information, visit https://bit.ly/4aqVe7w.