May is Lupus Awareness Month and the Lupus Research Institute (LRI), the S.L.E. Lupus Foundation and the LRI National Patient Coalition are committed to celebrating it through a series of events focused on the need for early disease diagnosis and novel research to improve the quality of life of patients who suffer from the disease.
The initiatives have been held by organizations since the beginning of the month in New York City, after Mayor Bill de Blasio designated May as lupus awareness month. Members of the associations are being invited to join the cause and help raise awareness about systemic lupus erythematosus (SLE).
The complex medical condition known as Lupus is commonly overlooked or mistakenly diagnosed. Patients tend to feel as if they are experiencing a flu that don’t pass while suffering from severe fatigue, joint pain, skin rashes and unexplained fevers. There is currently no cure for the disease and the associations work to support research that may find a cure or improve treatments that reduce complications.
In order to raise awareness of the disease, a larger-than-life window is being displayed in Rockefeller Plaza in midtown Manhattan. The installation was designed to emphasize the debilitating outcomes of lupus on the lives of patients, mainly among women in their 20s. LRI is particularly focused on ending the progression of the disease and organ damage by 2020.
“We need all hands on deck to deliver safer and more effective treatments to prevent disease progression,” said the CEO of the LRI/S.L.E. Lupus Foundation, Margaret Dowd, in a press release. “Active collaborations among all are key — government, the bio-pharma industry, academic medicine, non-profit organizations, and most importantly lupus patients and their families.”
LRI is organizing a series of awareness raising activities to encourage patients to participate in clinical research, which is crucial to developing new lupus therapies. The association is inviting everyone to visit their new website LupusTrials.org, which provides information on clinical research that helps patients find appropriate studies.
In addition, LRI is also presenting an exhibit on lupus trials at the free AWARE for All event at George Washington University in DC, organized by the Center for Information & Study on Clinical Research Participation (CISCRP). On May 9th, the Alliance for Lupus Research (ALR) New Jersey Walk is taking place at the Metlife Stadium to raise funding and support lupus research. All of the live or online educational events taking place in May can be found at LupusNY.org.
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