Cure CMD Partners with the Patient Helpline to Provide Support and Navigation Services
LAKEWOOD, CA — March 27, 2023 — Cure CMD announces its partnership with the Patient Helpline to provide direct, personalized access to information and network resources to find solutions when they are not sure how to find them on their own. Topics that are critical to patient access to care include paying for healthcare, selecting insurance plans, treatment centers, chronic and rare illness support, mental health services, legal support, health education, palliative care options, and more. The Patient Helpline is a program of Patients Rising.
Kelly Berger, Community Outreach & Engagement Coordinator at Cure CMD, said, “We are thrilled to partner with Patients Rising, an amazing resource for anyone in their journey navigating the complex waters of living with a medical condition. They offer a wealth of knowledge on advocating for your healthcare needs and a great system of support in whatever area you may need.” “The Patient Helpline supports patients navigating the healthcare system and ensures that they are seen, heard, and respected by every person along the way — a concept that aligns with Cure CMD’s mission of curating targeted support for the CMD community while along their journey. Cure CMD’s Outreach Team is excited to be able to refer our community, better fulfill their needs and utilize the experts and assets of Patients Rising,” said Avery Roberts, Community Outreach & Engagement Coordinator at Cure CMD.
“We're always looking for ways to bring experts into the Patient Helpline services that we provide to people across the country. When I met Cure CMD, it was immediately clear that they were going to be able to provide not only the practical expertise when we encounter a CMD patient but also the compassion and understanding that makes seeking help less uncomfortable. In return, we'd be able to help navigate CMD patients through the maze of issues our healthcare system presents to people, from transportation to caregiving resources and the million things in between. Patients Rising and the Patient Helpline are really excited about this partnership with Cure CMD,” said Jim Sliney, Jr., Executive Director at Patients Rising.
Patients Rising is a 100,000 member-organization of patients and caregivers living with chronic illness. The Washington D.C.-based non-profit works with patients to advocate for access to the treatments, innovations and care they need. Patient programs and initiatives include the Patient Helpline, Patients Rising University, Patient Access & Affordability Project, and Patients Rising NOW. Programming efforts focus on educating patients about the legislative process and empowering them to advocate for reforms to advance patient access, affordability, and transparency in healthcare. For more information, visit patientsrising.org.
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, Cure CMD’s impact includes:
funding over $4 million in research grants
launching two clinical trials
growing the Congenital Muscle Disease International Registry to more than 3,500 affected participants worldwide
hosting biennial Scientific & Family Conferences attended by more than 500 international stakeholders
producing more than 300 hours of video content through events and webinars to engage, educate, and support the affected community.