“We are proud to support the effort to build unity within the rare and ultra-rare disease community,” said Patrick J. McEnany, chairman and CEO of Catalyst.
This year, Rare Disease Day is slated for Sunday, Feb. 28, and features numerous initiatives throughout the week to raise awareness of rare disorders — such as LEMS, an autoimmune disease characterized by muscle weakness that starts in the lower limbs.
For information on available Rare Disease Day activities around the world, please visit this website.
The goal of this global initiative is to join together patients, caregivers, supporters, and the general public, as well as industry and government decision-makers, to raise awareness about the more than 7,000 identified rare diseases. The campaign also is a major fundraiser to support efforts in research, resources, and potential treatments for rare conditions.
The Catalyst-sponsored Facebook session, themed “Late-onset diagnosis of rare disease, misdiagnosis, and living with a chronic illness from a patient and HCP perspective,” will be hosted by The Mighty, an online patient community.
The discussion panel will include Chip, a LEMS patient advocate, and Ericka Greene, MD, a neurologist at Houston Methodist, in Texas. It will be moderated by Mike Porath, The Mighty’s founder and CEO. The session, which begins at 4 p.m., is slated to run until 4:45 p.m.
“Rare disease day is a great opportunity to drive awareness around the rare diseases that 300 million people live with,” said Porath. “It’s also an opportunity to drive collaboration among the patients, caregivers, doctors, drug makers and more who are working to improve the lives of those living with rare diseases. We’re proud to help bring these people and organizations together.”
Catalyst also announced that its team members are joining the “Show Your Stripes” campaign from the National Organization for Rare Disorders (NORD). This worldwide campaign encourages people to wear zebra stripes to raise awareness for rare conditions.
In addition, the company is launching its own “Rare Reason” campaign. Using #RareReason on social media, Catalyst’s employees, opinion leaders, and patient community are invited to share in a video their reason for being involved in the rare disease community.
“We are honored to provide our employees, patients, advocates, and family members a platform to amplify their voice and showcase their dedication and passion in advocating for the rare and ultra-rare disease community,” McEnany said. “Through this initiative we will continue to educate and raise awareness on the prevalence and challenges of those living with a rare disease.”
Firdapse is the first and only oral therapy for LEMS available in the U.S. Licensing rights for its development and commercialization in North America have belonged to Catalyst Pharmaceuticals since October 2012.
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