February 29, 2024

Recognizing Rare Disease Day and Beyond the Diagnosis

Photo of little girl smiling

It’s an honor to bring awareness to Rare Disease Day every year. At EVERSANA INTOUCH, we’re advocates for those living with rare diseases and support our clients who work tirelessly on life-saving treatments for the patients and families affected by these diseases.

A disease is considered rare when it affects fewer than 1 in 2,000 people. Rare Disease Day raises awareness for the 300 million people living with a rare disease around the world, their families and caretakers. Today, more than 6,000 rare diseases have been identified, yet there are often no existing effective cures.

Every year on February 28 (or 29 in leap years) – the rarest day of the year – we come together to highlight the experiences of rare disease patients and families and acknowledge the progress made towards more equitable healthcare, social opportunities, and access to diagnosis and therapies for people living with a rare disease. And at EVERSANA and EVERSANA INTOUCH, we are reminded to reflect on our own experiences and take action to not only support the rare disease community but to create a healthier world for all.

“It’s so important for each of us to recognize Rare Disease Day and what better time than on the rarest of days, February 29,” said Ann Cave, SVP, Head of Affiliate. “We have the opportunity to raise our collective voices to spread awareness and empower our community to share stories, offer support and turn struggles into opportunities for positive change for all those impacted with rare diseases worldwide.”

With our commitment to raising awareness for rare diseases, we teamed up with Mirum Pharmaceuticals, a valued partner, to support the organization Beyond the Diagnosis. Together, we sponsored a portrait of Lexi, a young girl living with Smith-Lemli-Opitz Syndrome (SLOS). Beyond the Diagnosis, known for using art to reach a broader audience, continues to showcase the power of creativity in fostering empathy and understanding for those facing rare diseases.

Lexi’s portrait joins the Beyond the Diagnosis exhibition, becoming a symbol of resilience and inspiration for rare disease awareness. The exhibit travels to various locations around the globe including past exhibitions at the National Institutes of Health, The Children’s Hospital of Alabama, Food & Drug Administration, Boston College, The Rare Fair, Times Square and more.

We commend the extraordinary individuals facing rare diseases every day and recognize the collective responsibility we hold in shaping a future where health knows no bounds. Together, we can make a lasting impact in the lives of those navigating the complexities of rare diseases.

Are you interested in working towards a greater purpose and creating a healthier world for all? Join our team!

Lexi and her family standing around her portrait
Portrait of Lexi