rare disease week

From Julia Band Orange and Julia Finch:

February 28 is the rarest last day of a month. On the last day of February, millions of people around the world observe Rare Disease Day to highlight rare diseases and what patients face. More than 7,000 rare diseases affect over 400 million people worldwide. That’s more than people living with cancer and AIDS combined, making them not so rare after all.

For those of you who do not know me, my name is Julia Band Orange and I am one of the (approximately) 3 million people living with a rare disease. I have a rare disease called Autoimmune Polyendocrinopathy Syndrome Type 1, which affects only 1 in 2 million people. I have missed countless days of school in my lifetime getting treated in hospital, have spent years in hospital as an inpatient and take around 52 pills daily (on a good day). All of this struggle has led me to advocacy and has opened doors for me to act as a voice for my community. 

Amidst the chaos of this pandemic, the lives of people with rare diseases are being disrupted like never before. This community has had their treatments on the backburner for so long, and now research and appointments are people’s lowest priorities. In order to make sure that they are not ignored, I, and my friend Julia Finch have created a Rare Disease Day in a Box to make sure that we continue to raise awareness about this pressing issue. 

You may be asking yourself, what does this “box” entail? We have compiled a website that includes speeches, articles, activity ideas (including a quiz), instructions on how to recycle old jeans into denim ribbons (80% of rare diseases are genetic, so wear jeans to celebrate genes), posters, pamphlets and much more! We have made it easy for you to join us in raising awareness, but we need your help to make this happen. 

I have been organizing rare disease awareness events at my couple for around 7 years, as has Julia for the last couple. Her sister Samantha also has APS1, so we have both taken on the mission of raising awareness in our communities. We are both now in grade 11 (class of 2022!) which means we will be graduating next year. We need to make sure that rare disease day and our community’s voice is heard even after we are gone. One of our goals with the RDD in a Box was to make it be easily accessible and feasible no matter where you are, as we need as many team members as we can to continue raising awareness for rare diseases. This is our legacy (for now at least) and we need you to help keep it alive. We need you. 

Approximately 95% of rare diseases still lack FDA-approved medical treatments. Families often have trouble accessing life-saving medical treatment or other services because their insurance companies, physicians, elected and other officials may not be familiar with their diseases. Raising public awareness truly makes a difference. It gives families hope and can lead to new, life-saving treatments. If you can’t organize your own event, that’s ok! But that doesn’t mean that you still can’t be a voice. One very easy thing people can do is wear jeans on Rare Disease Day to show their support. 80% of rare diseases are caused by faulty “genes”, so wearing “jeans” increases awareness. You can even post a picture of you and your jeans on social media with a message about Rare Disease Day! There are so many ways to raise awareness with us.

Rare Disease Day is about celebrating what makes us unique and rare, but one thing we all need to have in common is kindness. We can’t control what makes us different, but we can control how we treat one another. During the pandemic, we have realised this more than ever, and we can use all of this collective kindness to our advantage when it comes to raising awareness.

On February 28th. Rare Disease Day, 2021. Speak up, raise awareness, host your own Rare Disease Day in a Box, wear jeans, tweet using the hashtags #CareAboutRare and #RareDiseaseDay, do literally anything, but just be a voice. 

We can’t do this alone. Help us raise awareness and make sure that the voices of these 400 million people and their families are heard. 

Thank you so much for participating, York! We need you now more than ever.

Xo, the Julias 

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Here is the website to our “box”, where everything is in one accessible place. Feel free to share it with literally anyone so that they can set up their own event! Also, here is the donation form link so that even during the pandemic, you can support rare disease research and actively make change: