Rare Disease Day is February 28
There are 300 million people world-wide living with a rare disease. That’s why Crinetics remains committed not only to raising awareness for rare endocrine diseases but also to developing more effective treatments and getting them to patients.
So as we continue to new drug discovery for acromegaly, congenital hyperinsulinism, Cushing’s disease, and other life-threatening conditions, we pause to recognize Rare Disease Day and the millions of people who face the challenges of their disease with courage and grace.
RARE DISEASE DAY:
IN PATIENTS’ OWN WORDS
What’s it like to have a rare disease? How does it affect your life and that of your loved ones? We asked a few people to share their story.
ONE PATIENT’S UNIQUE STORY
Risa recently completed an 1,845-mile bike odyssey from Canada to Mexico. In this video of a recent talk, she shares her acromegaly story, her life as an endurance athlete, and what’s next in her quest to raise awareness for acromegaly.
A Patient's Message
Claire, diagnosed with acromegaly in 2017
Having a rare disease has a lot of unseen and unheard ramifications for a patient and their care team. For years – sometimes even decades – patients with complex issues may have been dismissed by doctors or told that their illness is psychosomatic.
Because some diseases are so rare, novice doctors, and even well-seasoned medical specialists, have been known to look at other issues and miss the clinical clues. And too frequently, the experts we trust with our health overlook the complex, mysterious overall pictures our bodies and hormones paint.
After misdiagnosis or non-treatment, a patient may feel muted; like they are invisible, yelling into a void. Once a clinical diagnosis is made, a patient like me may feel like they have to remain silent because there isn’t a large menu of treatment options for a rare disease like acromegaly.
It is unfortunate that outside of a medical setting most of us can’t talk about our rare illness. It simply doesn’t make sense to others (even those closest to us), because they have virtually no references like they do with cancer or cardiovascular disease.
Our diagnosis is something we carry silently and painfully.
Rare Disease Day spotlights unsung heroes: patients, caretakers, and medical experts. And I would be remiss not to include Crinetics.
Crinetics has shone light on endocrine diseases and has been the vanguard of treatment for diseases no other pharmaceutical company has wanted to touch.
Because of their fearless innovations and decades of inspired knowledge passed on by scientists and endocrine specialists, Crinetics has not only cracked a code that will improve the lives of many but has also moved the needle toward success. And they’re still moving it.
Crinetics has been dedicated to unlocking the clues to acromegaly by listening to the mysterious symptoms that have been “screaming out” from those who experience them…the real experts – the patients. Because of their expertise and dedication, Crinetics is giving thousands of patients and practitioners pathways to better health and better science.
Crinetics not only gives patients with rare diseases a platform to learn about cutting-edge treatments, it has also given us a megaphone to announce that diseases like acromegaly won’t be as acute for those who have endocrine or pituitary issues in the future.
Never Alone
Crinetics would like to recognize these organizations, whose work helps patients with rare endocrine disease face their challenges. We thank these important community members for all they do for patients and their families.
