Pharma, Patient Associations Join Efforts for HAE Awareness Day
Set annually on May 16, this event aims to increase awareness among the public, healthcare professionals, healthcare decision-makers, and industry representatives of HAE, a chronic disorder characterized by sudden swelling attacks in the skin’s deeper layers.
Led by HAE International (HAEi), a global non-profit network of patient associations, this year’s 10th anniversary HAE Awareness Day was bolstered by support from the Pharming Group, a biopharmaceutical company in the Netherlands, and Optime Care, a pharmacy, distribution, and patient management organization based in Missouri, in the U.S.
“We are proud to support the 10th annual hae-day 🙂 to raise awareness of HAE and better quality of [life] for patients and their families around the world,” Sijmen de Vries, CEO of the Pharming Group, said in a press release.
de Vries noted that people with the rare genetic disorder often are misdiagnosed because their symptoms resemble more common conditions.
“Pharming remains dedicated to making a positive difference to patients with this rare life-threatening condition so they can receive an accurate diagnosis and appropriate medical care,” de Vries said.
Optime Care focuses on tailoring and potentiating therapeutic opportunities for the treatment of orphan and rare disorders, such as HAE. For HAE Awareness Day 2021, the organization assumed the role of care coordinator for promoting testimonials of physicians working with HAE patients.
“This year, Optime Care is sharing care coordinator testimonials about their experience working with HAE patients,” Donovan Quill, president and CEO of Optime Care, said in a press release.
“My life has been touched in so many ways by the patients I have had over the years, but never quite the way that my HAE patients have,” said Liz, one of Optime Care’s care coordinators.
She said her patients motivate and encourage her — “and they have helped me grow into the best care coordinator I can be,” Liz added.
“Hearing a patient say I’ve taken a burden off their shoulders or how much they appreciate the efforts I put in is amazing,” said Rochelle, also a care coordinator.
“Patients have reported being able to regularly see their facial features now or being attack-free for the first time in their lives. I am so grateful to be a part of this change,” Rochelle said.
Optime Care is a partner of BioCryst Pharmaceuticals, the company that developed Orladeyo (berotralstat), an oral preventive treatment for HAE attacks. Orladeyo currently is approved to treat HAE patients, ages 12 and older, in the U.S., Japan, Europe, and more recently the U.K.
It was the first oral, preventive treatment to be approved in these countries.
“Access to innovative therapies that can improve quality of life is critical for people with rare diseases like HAE,” Quill said. “We are proud to be partnering with BioCryst, a biotech company that focuses on developing novel drugs for rare disease, to help bring the first oral, once-daily prophylaxis [preventive] medicine to members of the HAE community.”