Almost by definition, rare diseases are so unusual information about them isn't readily accessible—not only for patients chasing a diagnosis but for the physicians trying to help them.
HRA Pharma wants to change that for at least one rare disease, Cushing's syndrome, with the debut of a one-stop information hub for healthcare providers. The rare disease, caused by tumors in the pituitary or adrenal glands, affects women more than men and typically begins in patients over the age of 40. Between 700,000 and 2.4 million new cases are diagnosed every year.
The effort comes from HRA Pharma Rare Diseases, a division of HRA Pharma, which is sponsoring Cushing’s Hub along with Springer Healthcare Education in a bid to make information more accessible to healthcare professionals worldwide.
Knowledge is especially scarce in less-populated or remote locations where there may not be as many cases, Evelina Paberžė, chief operating officer of HRA Pharma Rare Diseases, said. The hub was developed after requests from the Cushing's syndrome community.
“The ultimate objective is giving the best care for the patients through improving the knowledge and awareness of the their physicians and all the health care professionals," she said.
RELATED: Recordati scores FDA nod for Cushing's disease med—and Novartis castoff—Isturisa
On the platform, specific information about the rare syndrome, triggered by persistently high levels of cortisol, is aggregated to make diagnosis, treatment and even just discussions easier.
“This information is scarce—it's also a little bit here and there. There was no one place where everybody could go and look for the information,” Paberžė said.
HRA handed over content and editorial control to Springer Healthcare Education, giving the group an unrestricted educational grant and zero influence from the pharma.
RELATED: Rocket Pharma spurs more buildings and landmarks to light up for Rare Disease Day
Cushing's Hub launched in March with digital promotion from both Springer and HRA across their social channels and messaging to key opinion leaders and at medical events with the message that all are welcome.
HRA Pharma Rare Diseases is one of the few companies working in Cushing’s syndrome. Its portfolio of therapies used in treatment of the rare condition are Metopirone, Ketoconazole HRA and adrenal cortical carcinoma drug Lysodren.