Connect with others and share your authentic rare disease patient story

Colby Rogers

Editor and Director of Social Strategy, Patient Worthy

The rare disease community is vast and diverse, encompassing around 300 million people globally. Taken as a whole, rare disease is not as rare as it seems at first glance.

Regardless of the numbers, one defining quality of the rare disease community is that it is full of fierce advocates who stick together to lead their cause into the future. The mantra ‘nothing about us, without us’ has been a rallying cry for patient advocacy for decades.

Empowering patients through authentic voices

At Patient Worthy, we believe that the best way for patients to advocate for themselves is to do it with their own, authentic voices.

Since 2015, we have been helping rare disease patients around the world tell their stories. Whether it’s the latest in rare disease news, courageous patient profiles or heartfelt interviews on our award-winning podcast, Patient Worthy strives to bring the champions of the rare community together. We’re proud to say that we have helped many people reading this feel more connected with their rare communities.

One idea that we consistently hear from rare disease
patients is how connecting and interacting with
others like them has been a lifeline on their journey.

Growing awareness of acromegaly

Recently, we shared a story that brought together the powerful voices of six people living with acromegaly, a rare hormone disorder characterised by abnormal growth in the extremities and other areas of the body. These patients talked about the challenges in their lives, but also about how becoming part of an acromegaly mentorship programme has provided a way to support their patient communities.

One idea that we consistently hear from rare disease patients is how connecting and interacting with others like them has been a lifeline on their journey. We’re proud to say that this collaborative interview was read by more than 10,000 people around the world at PatientWorthy.com. 

Amplify your story and inspire change

Another way that Patient Worthy helps to connect rare disease patients is through patient ambassadorship. We help connect patients with opportunities around the world that need your authentic story, sharing that message with ​other patients, caregivers and ​medical professionals. Your journey can help raise ​awareness and inspire change. Your story could be just the thing that someone else like you needs to hear.