The Pharmafile Autumn edition is now live!
Our Marketing and Engagement Manager, Blayne, wrote a piece on rare diseases for the magazine’s section on the ‘Diagnostic Odyssey’ and the psychological and logistical impact rare conditions have on patients and their families.
Blayne discusses the life-changing decisions patients are forced to make when seeking treatment and how their hopes lie in that therapy.
She stresses the importance of making new therapies in collaboration with patients, as it’s they who will ultimately have the treatment and fully understand what is needed from it.
She challenges the pharmaceutical industry to:
“never lose sight of the patient experience when developing rare disease treatments. It is extremely easy to get bogged down in the science of a drug and forget about the patient experience of those who are relying on your research. Rare disease patient populations may be small, but each number is a human being who has dreams, hopes and fears. Rare diseases are cruel, unfair and overwhelming. Living with one can challenge, devastate and isolate. The treatments you create are what keep the fire and hope alive for rare patients and their families.”
She asks that if you only remember one message from her article, she’d like it to be this:
“See the people, not the profits. Every number has a face. Every number has those who love them. Every number has a life to live. Every number depends on you. Listen to those you serve. Listen to the patient voice.”
Read Blayne’s article in full now and let us know what you think on social media!
Please note: This article was taken from Pharmafile Autumn 2021, page 32. Samedan Ltd