Serving patients with rare, orphan, and devastating conditions is the reason PANTHERx Rare exists. The launch of our new website has created a platform through which we are able to relay our patients’ disease experiences. These stories are meant to illustrate the day to day struggles and the joys of being able to overcome some of the burdens of living with a rare condition.
PANTHERx is pleased to share the first video in our Patient Profile Series, featuring Caitlyn, a young woman living with Hypophosphatasia (HPP). Caitlyn shares what it is like to grow up, navigate college, and plan her future while considering the implications of her diagnosis. Debbie, Caitlyn’s mother, offers a unique perspective on her experiences caring for a child with a rare disease. PANTHERx has been providing care and facilitating medication coordination for Caitlyn since she began taking medication for HPP. Our associates, particularly those in Caitlyn’s RxARECARE® Team, were delighted to meet her, ask questions about her experiences with HPP, and put a face to the name and the family that they have been supporting for many years.
As PANTHERx expands this series, it is our hope that the profile patients find empowerment in sharing their stories. We hope viewers feel inspired and that they are made more knowledgeable about every disease state that PANTHERx supports. For people who are diagnosed with these diseases or who care for someone with a rare disease, we encourage them to find hope in these stories and a connection with the people profiled who, like them, live with a rare disease every day.
PANTHERx looks forward to introducing our community to many more of our extraordinary patients as this series progresses.
Caitlyn’s full video and profile can be found at on our Hypophosphatasia (HPP) Rare Disorders page.
If you would like to be considered for a PANTHERx Patient Profile please contact Ally Ayoob, Marketing Specialist, at firstname.lastname@example.org.