Free virtual conference aims to empower sarcoidosis community
Event will feature expert-led presentations and discussions
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The Sarcoidosis Research Institute (SRI) will host a free virtual conference in April aimed at empowering people affected by sarcoidosis.
The conference, called Empowering the Patient Journey: Living Well with Sarcoidosis, will take place from 1 p.m. to 5 p.m. EST on April 25. It will feature expert-led presentations and discussions on a range of relevant topics.
The conference is for people with sarcoidosis and their families and caregivers, as well as clinicians who help care for people with the disease. Registration is available online. The four-hour event will offer flexible scheduling so participants can attend whichever parts they find most relevant, according to a flyer from SRI.
Presenters include Sarcoidosis News columnist
The conference is sponsored by Sarcoidosis News and Xentria, which is developing XTMAB-16 as a potential treatment for pulmonary sarcoidosis. Kerry Wong, a patient advocate who writes the column Float Like a Butterfly at Sarcoidosis News, will also be presenting at the conference.
“I’m eager to share my own experience as a patient, but after a quick look at the agenda, I’m even more excited to attend the conference myself,” Wong said in an emailed statement to Sarcoidosis News. “With health experts I admire and much-needed sessions on fatigue and quality of life, mental health, and being heard, there are sure to be many great takeaways to empower us all to live well with sarcoidosis.”
The overall goal of the conference is to equip participants with up-to-date, accurate information about sarcoidosis and offer practical tips for managing the disease. The event also aims to foster connections among people in the sarcoidosis community.
“When I was diagnosed with sarcoidosis in 1981, patient information and education were [nonexistent], and I didn’t know anyone else with the disease. Five years later, I finally met one person with sarcoidosis, and she passed away shortly thereafter,” Paula Yette Polite, founder of the SRI, said in an institute press release. “I am thrilled that the Sarcoidosis Research Institute can provide patients with a space to learn more about this disease, feel less isolated, and feel empowered to manage their healthcare.”
Disease affects some populations more than others
Sarcoidosis is a chronic inflammatory disease marked by granulomas, abnormal clumps of immune cells, which can form in organs throughout the body and lead to a wide array of symptoms.
Every year, about 25,000 people are diagnosed with sarcoidosis in the U.S., according to Ogugua Ndili Obi, MD, who directs the Sarcoidosis Center of Excellence at East Carolina University and will speak about fatigue and quality of life at the upcoming conference. Obi noted that although anyone can get sarcoidosis, the disease affects some populations more than others.
“Sarcoidosis is a worldwide disease. The incidence varies widely by ethnicity and geography,” Obi said. “The disease is more common among Northern Europeans (Scandinavians) and African Americans. … In the [U.S.], the annual incidence of sarcoidosis in African Americans is three times that of Caucasians.”
Marc Judson, MD, chief of the division of pulmonary and critical care medicine at Albany Medical College, will be providing an overview of the disease during the conference. Judson also works for the Cleveland Clinic.
“I will describe the basic manifestations of sarcoidosis, the natural course of the disease, the indications for treatment, and the basic treatment approach, including a discussion of common medications used for treatment,” Judson said in an emailed statement to Sarcoidosis News. “I would like the participants to understand the general manifestations of sarcoidosis, the general indications for treatment, the types of treatments available, and the natural course of the disease.”
Sarcoidosis can be extremely complex to manage. Judson stressed that the best outcomes happen when patients are well-informed enough to have educated discussions with their healthcare team about what will work best in their specific situation. He said he hopes the upcoming conference will help prepare patients for these conversations.
The event will also include an opening address by Rhonda McCullough, CEO and president of the Bernie Mac Foundation, which supports sarcoidosis research and awareness. McCullough is the widow of comedian and actor Bernie Mac, who died due to sarcoidosis-related complications.
