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Rare Disease Day: A Reminder of Our Immense Responsibility to Serve Patients and Families

Rare Disease Day is an observance to help raise awareness for the 300 million people living with rare diseases worldwide. For Orsini, it is a day to reflect on “why” we do what we do – to provide hope to patients and their families along their path to better health. Whether we are providing them the medication they need, helping them stay adherent to their treatment plan, or supporting them to overcome obstacles in accessing their therapy, we do this with compassion, care, and speed.

This year, we asked our employees to share what Rare Disease Day means to them. The response was overwhelming, and personally, it was inspiring to see that patient-centered care is truly woven into the fabric of our culture. Helping patients access revolutionary treatments and simplifying their journey is not just what we do – it is who we are – it is our mission and purpose. Below are just a few of the thoughts shared by our team.

The medication we dispense does not just change the patient’s life; it changes everyone around them. That is what Rare Disease Day means to me – changing our patients and their families’ lives for the better.” – Stephanie, Therapy Account Liaison

Rare Disease Day is personal to me. My son was diagnosed at the age of 5 with Hereditary Angioedema (HAE), and he passed away from HAE when he was 19 years old. Whenever I am gifted with the opportunity to help a patient, it provides comfort and healing. Being a part of the Orsini team that can help make that happen has been, and continues to be, a gift to me.” – Jenny, Patient Advocate

Rare Disease Day is a day to celebrate and honor every patient dealing with a rare condition. I can imagine how difficult it is to learn a loved one, or a family member has a rare disease. We must show compassion and care to our patients.” – Jose, Patient Care Coordinator

What Rare Disease Day means to me is that there are people who are someone’s parent, sibling, child, friend, neighbor, etc., battling something within their health they never planned or deserved but need help to get through it each day. I am honored and glad that I work for a company that helps patients get through their daily lives with the medication they need.” – Melodie, Care Team Manager

Advocacy and fighting to protect access to care for those who cannot find their way through the maze of healthcare…The families we partner with are brilliant and capable, and self-advocating. I am amazed every day at the effort they will go to for their loved ones.” – Buffy, Program Director

Remembering why we do what we do and for whom we do it. For the people suffering from rare diseases and their families, for all the hardship and suffering that they endure, Rare Disease Day is a time for me to reflect on the fact that every one of us plays a pivotal role in increasing the quality of life of our patients and their families.” – Mark, Controller

Rare disease is why I work in the industry I am in. I make sure to put my patients first in ensuring they receive their medication on time by advocating for their authorization and access to their therapy. Many people affected by rare diseases are children, and knowing this makes me more empathetic and understanding of the families and what they may be experiencing.” – Melanie, Prior Authorization Representative

At Orsini, we value the connections formed with the patients, families, and caregivers we are privileged to serve. These connections allow us to understand real-world perspectives and provide each patient the support they need to be successful along their unique journey. Hopefully, it is obvious to you that Rare Disease Day is special to us – it’s an opportunity to reaffirm our commitment to supporting the rare disease community to ensure that No Patient is Left Behind!