The nonprofit, which supports patients with DMD, their caregivers, and loved ones, aims to act as an information conduit, educating the DMD community on COVID-19 vaccination, while working with local authorities to promote and facilitate patient access to the new vaccines.
“We are a leading voice for the Duchenne community and steadfast in our commitment to support and educate on anything related to COVID-19, including the vaccine,” Debra Miller, founder and CEO of CureDuchenne, said in a press release.
“Our team worked tirelessly to develop a suite of support tools that educate and inform our community with the facts that matter to them the most. As we work with states and local officials, we look forward to advocating on behalf of the entire Duchenne community while the vaccine rollout progresses. Our goal is to inoculate everyone affected by Duchenne,” Miller added.
As part of this initiative, CureDuchenne will host a webinar at 4 p.m. EST Jan. 22 to discuss the vaccine rollout and the impact vaccination will have on the lives of those with DMD.
The webinar, titled “COVID-19 Vaccines — What the Duchenne Community Needs to Know,” will feature a panel of experts from U.S. regulatory health agencies and clinicians, as well as William Gruber, MD, senior vice president of vaccine clinical research and development at Pfizer, which developed one of the currently authorized COVID-19 vaccines, along with Moderna.
The webinar is open to the entire DMD community, as well as clinicians, researchers, investors, and representatives of pharmaceutical companies. Those wishing to attend the webinar should complete their registration here. The webinar will be available for download at the CureDuchenne website after the event.
As part of its efforts to educate the DMD community on COVID-19 vaccination, CureDuchenne has also made available a variety of up-to-date COVID-19 resources that can be accessed here.
Last year, the nonprofit also sent a letter to the Advisory Committee on Immunization Practices requesting that all DMD patients within the approved age groups be given priority access to the COVID-19 vaccines.
CureDuchenne also has a team of experts trained to provide information, guide, and support patients and their families throughout the entire vaccination process. Those wishing to know more about the process may contact the this expert team at [email protected]chenne.org.
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