February 22, 2021

Rare Disease Day 2021: Data Is the Key to a Rare Disease Diagnosis  

rare disease day

Rare Disease Day Overview
The last day of February marks Rare Disease Day, which is honored annually to raise awareness for those impacted by a rare disease. In addition to their unique medical problems, people struggle to find information, advocate to receive proper treatment, and fight to get a proper diagnosis.  

For people suffering with an undiagnosed disease, data holds the key to ending years of uncertainty. The challenge is getting it, and that’s where Intouch Group is stepping in 

Everything We Do Starts With Our Clients
Intouch Group understands the importance of Rare Disease Day through our work with many rare disease clients. This year, Intouch Group is joining the conversation and spotlighting the need for awareness and research into rare diseases. This initiative shines a light on the experiences of those living with rare conditions such as hereditary angioedema, Ehlers-Danlos syndrome, primary immunodeficiency, and myasthenia gravis. These stories highlight the crucial points of data that led them to an official diagnosis.

One in 10 Americans are suffering from a rare disease — that’s 25-30 million Americans. For many, it could take years to get a diagnosis — some wait as long as 41 years. That’s why it’s so important to amplify their voices and let their stories be heard — one pivotal data point can end years of searching for an answer.

Intouch Group designed DataPointsToRare.com to celebrate the stories of people successfully reaching a diagnosis and to commit to making more of them possible through the power of data. The data that makes a difference can come in many shapes — test results, MRIs, conversations with a doctor, something overheard in a waiting room, even a misdiagnosis. We believe that data holds the key to expediting the path to diagnosis, especially in rare communities where diagnosis often takes years.

Get Involved
We invite you to join in on Rare Disease Day and help raise awareness by 

  • Spreading the Word. Visit DataPointsToRare.com and get the word out by clicking one of the social platform icons. Encourage friends and family to take a look!     
  • Sharing Your RareIf you or a loved one are living with a rare disease and you’re willing to share your story, let us know! We’d love to hear about the pivotal data points that helped you or a loved one reach diagnosis. Share your story here 
  • Engaging With Us. We’ll be posting to all of the Intouch Group social channels before and after the big day. Find us on FacebookInstagramTwitter, and LinkedIn to like, comment, or share our Rare Disease Day content.  

We’re so excited to make an impact in the rare disease community. We hope you join us to honor those impacted by rare diseases.