“We look forward to partnering with Patient Worthy, to create targeted and reliable community resources, and continue to grow awareness about congenital muscular dystrophy,” Avery Roberts, Cure CMD Outreach Team Member said. “Even though our community is not well known, we’re not so rare.”
“Patient Worthy is delighted to welcome Cure CMD as a rare disease advocacy partner, to help us educate the world about congenital muscular dystrophy and support their community,” said Kathryn Devanny, Director of Advocacy Relations at Patient Worthy.
Patient Worthy is an online publication that provides relevant information to rare disease patients, caregivers, and advocates alike. They connect those impacted by rare conditions with educational resources, advocacy groups, and news updates regarding rare disease research from across the globe. Through the goal of amplifying the voices of those in the rare disease community, the organization features the institutions which serve them and foster solidarity across diagnoses. At Patient Worthy, if they are not learning to live with a chronic illness or rare disease themselves, they are loving or working with someone who is. It is from this personal perspective, that their passion for rare disease awareness brings you Rare Patient News. Well Done.® For more information, visit patientworthy.com.
Cure CMD was founded in 2008 by three parents whose children have congenital muscular dystrophy (CMD), with a mission to advance research toward treatments and improve the lives of those living with CMD through engagement and support of our community. Through close collaboration with researchers, clinicians, families, industry, and generous supporters, we have made an incredible impact on the lives of those living with CMD.