“This technology allows those living with a rare disease or working through the early stages of diagnosis, treatments, protocols, and overall acceptance to connect and share without limitations of proximity. When we share our experiences and tools for healing, we empower each other to live our best lives in spite of a disease label. Having a rare disease can be a lonely isolating experience, and this app eases any negative feelings; in some cases can eliminate that side effect altogether. By using this app, the very nature of your 'rare' condition doesn't seem so uncommon, and that alone is a relief.”
"The ease of use of the Rare Guru app was a welcome gift in a time of confusion and research overload. Being a caregiver and family member to someone with a rare disease is overwhelming. To find this app and use it not only to learn more about the rare condition my family member has but also to be connected to a community of others that I could connect with has been invaluable to me."