Inspiration

Our Inspiration

From Tourette Syndrome to Rare not Alone organization

The Founder Wants to Say:

❝ A disease called Tourette Syndrome I got during childhood inspires me to build Rare not Alone Organization. My journey with the illness was difficult with overlooking and misdiagnosis, but it lets meet with other children with Tourette and other rare diseases and makes me realize the prevalence and impact of Tourette on children. Moreover, I reflect that Tourette may not be an only disease that is easily overlooked and misdiagnosed. There are other diseases like ADHD and Autism that are easily overlooked. Indeed, there are also numerous rare diseases, which are even harder to diagnose and treat. All the diseases I mentioned above are not as common as diseases like a cold or asthma, so I want to call them diseases that are easily misdiagnosed. For me, establishing Rare not Alone organization is to let more people to see and support children with these diseases.

I don't hope rareness leads to aloneness—we are a community, helping each other. That's why I want "Rare not Alone".❞

Raymond Shi, the President and founder of Rare not Alone Organization

Inspirational Journey

💭From Tourette to Reflection💭

Children with Tourette Syndrome (TS) exhibits Tics, including motor tics and vocal tics. Motor tics such as blinking and head shaking disrupt children's attention, and vocal tics make children different from other children in the classroom. They suffer not just physically from the symptoms but also psychiatrically. However, it's unfortunate that since the symptoms of TS do not considerably threaten children's lives like cancer, TS is often ignored by caregivers and misdiagnosed by physicians. Nevertheless, as TS negatively affect children's life quality, earlier diagnosis and treatments that help control the symptoms are necessary.

In order to achieve earlier diagnosis and treatments, public awareness to TS is crucial since it enables more caregivers to realize the symptoms of TS and more physicians to give correct diagnosis.

📖 Click here to learn about Tourette Syndrome and increase your awareness to it

🔄 From Tourette to other Relative Rare Diseases ✨

Because the symptoms of Tourette Syndrome often overlap with other conditions, Tourette Syndrome is often overlooked or underestimated especially by people with low medical literacy. However, apart from Tourette, there are other diseases that are easily overlooked. Therefore, to enhance earlier diagnosis and treatments, we also hope more people can be aware of diseases that have mild symptoms and thus are easily overlooked. In this way, children with these diseases can accept diagnosis and treatments earlier and have a better quality of life. That's why we also built the Menu of Easily Misdiagnosed Disorders.

📋 Click here to see the Menu of Easily Misdiagnosed Disorders

🔄 From Easily Misdiagnosed Disorders to True Rare Diseases 🦄

Yes, increasing public awareness to TS and other easily misdiagnosed diseases is crucial since it empowers earlier diagnosis and treatments, but what about the true rare diseases? Don't they need public awareness, earlier diagnosis, treatments?

They may need even more!

A single rare disease affects a small population (generally smaller than 0.1% of the whole population), so it is even harder to diagnose and treat effectively. Thus, more people also should be aware of rare diseases, give supports to children with rare diseases, and power the progress of rare diseases' research. That's why, apart from TS and relative rare diseases, we also constructed a menu for rare diseases, hoping to increase public awareness to rare diseases.

📋 Click here to see the Common Rare Disease Menu