The most compounding factor of rare disease is it’s just that: rare. While there are more than 7,000 known rare diseases, which affect somewhere between 25 and 30 million Americans according to the NIH, each patient’s experience is truly unique. That means there’s no one way to understand rare disease.  

Because of the unusual nature of a rare disease, the patient and family are often learning and navigating together with their clinician. Clinical treatment guidelines don’t typically exist. Living between the lines becomes commonplace.  

This is where advocacy organizations come in. By partnering with advocacy organizations, the healthcare industry can build better experiences that center on the patient, their families and their caregivers by ensuring that their voices help shape the quality of care for their diagnoses.   

“The diagnostic odyssey for rare disease can be long and complex. Until a diagnosis is confirmed, patients and families live in limbo, without a community. Once they receive a diagnosis, connecting with patient advocacy organizations can help them find community and lift the sense of isolation,” explains Tiffany Cook of InCommon. 

InCommon, a division of Cadent, works to “foster meaningful alliances between Industry and Advocacy to empower patient communities.” Co-led by Meredith Wilson and Tiffany Cook, InCommon leverages the vast resources of Syneos Health to center patient experiences within the healthcare industry, creating better partnerships, smarter research and more successful therapies overall.  

Keeping the patient community at the heart of our work as members of the healthcare industry holds the power to build better research enrollment, minimize drop out, strengthen therapy consistency and, at the end of the day, create better solutions that improve quality of life for those affected by rare disease.  

What can marketers and healthcare providers learn from this?   

  • Have a patient-centric mindset.  

Because each rare disease diagnosis is unique, it takes a mindset shift to truly understand the care gap that you are working to fill. This lens is critical to the success of research, therapies and campaigns. 

  • Collaborate with the community you serve.  

Include advocacy organizations in the decision-making process. Make it easy for patients and their families to participate in research initiatives–and compensate them for their time. Support advocacy missions alongside your own work, making the partnership mutually beneficial overall.  

  • Don’t just check the box. 

Make patient centricity part of your mantra and work it into every aspect of your process. From brainstorm to product launch and everything in between, continue to ask yourself, “how might our patients benefit from this?”  

“By engaging and building an ongoing, and mutually beneficial partnership, you will serve your clients better, leading to better work and better patient experience. This collaboration lifts all boats.”–Meredith Wilson  

A recent survey led by members of Syneos Health across the Rare Disease and Patient Voice Consortia, members of the Clinical Team, and InCommon, that focused on the patient voice in rare disease drug development process, yielded some interesting results which will be shared in an upcoming and highly anticipated white paper. To learn more about InCommon and the incredible work they are doing, contact Tiffany Cook or Meredith Wilson at [email protected], and visit the website at 

Register to participate in Syneos Health upcoming Rare Disease Day programming HERE.  

About the Author:

Kelly Abrams, Content Strategy Director at Syneos Health Communications, has a deep curiosity for what drives human behavior and is passionate about telling stories that connect the dots between data and the everyday. Prior to her career at Syneos, Kelly helped clients build brand loyalty and communicate with purpose in industries like retail, healthcare, and higher education.