CureDuchenne is the leading non-profit organization dedicated to saving the lives of those affected by Duchenne muscular dystrophy. The Director of Patient Care Programs is a business development position to provide strategic planning and implementation of CureDuchenne’s Patient Care Programs.
We are looking for a strategic thinker and business leader with experience in healthcare/ pharmaceutical/biotech industry ideally in the rare disease space to grow the CureDuchenne Patient Care Program through securing corporate sponsorships, grant writing and relationship building. In addition, this position will focus on access and advocacy issues to support the Duchenne community.
Procure corporate sponsorships and provide excellent communication and service to our partners.
Develop strong relationships with sponsors, pharmaceutical companies, healthcare providers
Write and secure grants to help fund overall program and special projects
Develop and manage Patient Care business plan, budget and reporting
Network at CureDuchenne Cares Family Workshops and Summits
Educate patients and their parents on insurance issues to know their rights and to better attain access from insurance providers on their desired drugs
Work with insurance companies so they understand the unique needs of the Duchenne community and the scarcity of treatment options available
Collaborate closely with the National Organization for Rare Disorders, EveryLife Foundation, Global Genes and others to influence policy decisions for better outcomes for patients and industry members
Lead patient advocacy efforts
Oversee and expand patient registry
Work closely with CEO, CureDuchenne Cares Program Director and other CureDuchenne Cares team members
Provide supervision to the Program Services Manager for support tasks
Identify and manage other special projects, as needed
BA or BS degree or equivalent experience
10 years of prior related work experience, preferably in the healthcare field
Ability to demonstrate successful business development experience
Superior customer service and professional demeanor
Strong persuasive communicator
Excellent verbal and written communications skills
Strong interpersonal and presentation skills required; ability to cold call, grow contacts and build and nurture effective business relationships to increase CureDuchenne’s visibility, brand awareness, and revenue.
Detail oriented, adaptable, organized and demonstrated ability to successfully manage multiple projects and tasks.
Positive attitude and ability to work well with a team.
Must be able to read, comprehend and analyze financial goals and fundraising reports and generate required reports on a timely basis.
Excellent computer skills including Word, PowerPoint, Excel and Outlook.
Must be able and willing to work evenings and travel on weekends as necessary.
Position based in Newport Beach, Calif., headquarters.
Duchenne is the most common and lethal muscle disease in children. One in every 3,500 male births results in a child being afflicted with the disease. Boys with Duchenne are usually diagnosed before the age of 5, in a wheelchair by age 12 and most don’t survive their mid-20s. The simplest of tasks become difficult, and in the later stages, heart and breathing muscles fail. Every day two boys die f...rom Duchenne. More than 24,000 boys are living with the disease in the United States alone and more than 300,000 worldwide. The disorder knows no ethnic, economic or social boundaries.