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 cancer or stroke, so I want to call them as relatively rare. For me, establishing Rare not Alone organization is to let more people to see and support children with these relative rare 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
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 ✨
Due to the relative mild symptoms of Tourette Syndrome compared with diseases such as heart disease, the symptoms of Tourette are often overlooked or underestimated especially by people with low medical literacy. However, apart from Tourette, there are other diseases also having relative mild symptoms and easily being overlooked. (They are not as common as cancer or flu but also not as rare as rare diseases, so we call them "Relative Rare Diseases") Therefore, to enhance earlier diagnosis and treatments, we also hope more people can be aware of relative rare 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 life quality. That's why we also built the Menu of other Relative Rare Diseases.
🔄 From Relative Rare Diseases to True Rare Diseases 🦄
Yes, increasing public awareness to TS and relative rare diseases is crucial since it empowers earlier diagnosis and treatments, but what are 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.