Rare but Not Alone: Why We’re Supporting Rare Disease Day

No two experiences with rare disease are the same. Something so unique requires support, solidarity, and community. That’s why Rare Disease Day is dedicated to raising awareness and generating change for the 300 million people living with rare conditions around the world.  

Those affected by rare disease—as patients, caregivers, friends, and family—face many challenges. Lack of scientific knowledge, research funding, awareness, and quality healthcare means many patients experience delayed or misdiagnosis, difficulty accessing treatment, and heavy social, financial, and emotional burden. Yet advancement in rare disease treatments is an advancement for healthcare at large: understanding what causes rare disease can lead to better treatment for common health conditions, too. Rare Disease Day is an opportunity to shed light on these challenges and opportunities, while opening up avenues for change.  

Through our client work at Cramer Health, we have been able to meet patients in the rare disease community. Their journeys have touched us deeply. Because of this, we are Sharing our Colors to offer support and join together with patients, families, and caregivers.  

 “A few years ago, I had the opportunity to write a book to educate and support people diagnosed with Hereditary ATTR amyloidosis,” said Angel Micarelli, Senior Vice President of Strategy & Content at Cramer Health. “It’s a rare, inherited condition with devastating symptoms. An affected individual has a 50% chance of passing on the gene mutation that causes the disease to their children, so it can have a far-reaching impact in individual families. I had the privilege of interviewing a family who told a story of generations ravaged by the disease. They were so generous in sharing their pain, challenges, and hopes so they might help other families. I was honored to meet them and still remember their courage and the relentless support they gave one another.” 

Rare disease is personal. Through sharing stories and personal commitment, we can work toward better diagnosis, treatment, health and social care, and social opportunity.  

Our work with clients also has helped us see the need to support each person’s journey with highly personalized information. We worked with a large biopharma organization to develop a communications plan for patient support for a rare blood treatment. As we spoke with those working in the field and learned more about the disease, it was clear that a one-size-fits-all communications approach was not an option. The needs and interests of caregivers, children, young adults, and older adults all varied. By segmenting messaging by audience and tailoring it to the recipient’s communication preference (text, phone, email, mail, etc.), we could deliver a personalized experience with the right tone and messaging.     

We’ve learned more from the people we’ve worked with than the work we have done. It’s those people that have inspired us to support Rare Disease Day. Join us in Sharing your Colors so that working together, we can ensure rare does not mean alone.  

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