Senior Director Community Engagement And Advocacy

Senior Director of Community Engagement/Advocacy

This position will work in the Newport Beach, CA office. This is not a remote or hybrid position.

Company Overview

CureDuchenne is a leader in funding medical research, driving improved care and uniting the Duchenne muscular dystrophy community.Duchenne is a progressive, fatal, and rare disease affecting children and young adults. CureDuchenne is recognized as the leading Duchenne Venture Philanthropy organization, blending a commitment to a cure with an excellent record of biotech investing.CureDuchenne is a 501(c)3 non-profit that encompasses a small, dedicated venture capital firm, investing in early-stage biotech companies, and has experienced great success due to our expert scientific team’s rigor.

Additionally, CureDuchenne is a comprehensive advocacy organization addressing the needs of affected families and the research and medical teams serving this community.CureDuchenne has and will continue to be a catalyst for positive change leading to a cure.We have experienced a wonderful period of growth as the direct result of increasing our innovative programs and specifically targeting the needs of the patients we serve.

To learn more about CureDuchenne go to:www.cureduchenne.org

The Senior Director of Community Engagement/Advocacy for CureDuchenne plays a crucial role in improving the lives of individuals and families affected by Duchenne muscular dystrophy.This position will create and implement the strategy to increase the awareness and participation of these families with CureDuchenne events and initiatives.This role also acts as the bridge and voice from the community to biotech, pharmaceutical companies, clinicians and government agencies.Simultaneously, this professional will act as a community listening agent and become a champion for the needs of the Duchenne community. As Senior Director of Community Engagement/Advocacy you will manage relationships with CureDuchenne’s biotech/pharma partners who sponsor the community engagement programs while at the same time seek to build relationships with new companies entering the DMD space.The Senior Director of Community Engagement/Advocacy facilitates and fosters relationships with numerous constituents.

Duties and Responsibilities

Leadership Responsibilities

• Lead, inspire and mentor the Community Engagement, Operations and Physical Therapy teams
• Liaison with marketing and communications departments to ensure impactful and appropriate public communications
• Act as a liaison between families and biotech/pharma partners and connect the appropriate parties to one another in a compliant manner.
• Develop external relationships that will help CureDuchenne serve our community through alliances, associations, regulators and payers.
• Help create department budget and assist team members in tracking and maintaining budget diligence
• Set goals and strategies to engage all constituents in the Duchenne community to work together to provide better care and assist in funding key research projects
• ·Create and implement a strategy and business plan for exponential growth and awareness of CureDuchenne’s family events, initiatives and resources

Biotech/Pharma Partners

The Sr. Director of Community Engagement manages relationships with all CureDuchenne’s biotech/pharma partners that sponsor the community engagement program and seeks to build relationships with new companies entering the DMD space.

• Invites biotech/pharma to speak at events and conferences.
• Sr. Director is main point of contact for biotech/pharma sponsors who are seeking to fulfill their DMD community engagement goals (enrollment, awareness, education, etc.)
• Increases sponsorship revenue YOY by creating and customizing new sponsorship items that align with the evolving research landscape.
• Provides feedback to biotech/pharma on their patient engagement programs, patient education materials, clinical trial protocols and marketing materials, and family-facing presentations to ensure they are family-appropriate and relevant to the community
• Builds, presents, and facilitates the CureDuchenne community engagement sponsorship prospectus to all biotech/pharma companies in the DMD space every year.
• Leads monthly biotech/pharma sponsor calls regarding their program updates and provides a CureDuchenne update.

Healthcare Providers/Clinics and Researcher/Scientists

• Serve as the main POC for clinicians to request CureDuchenne’s resources and expertise to help the families they treat
• Foster relationships with Clinician/Researcher KOLs and their teams to collaborate on projects such as speaking opportunities, conferences, educational resources, programs, etc.
• Oversee the first CureDuchenne Clinic and build a strategy to bring additional clinics into our network.
• ·Develop strong relationships with Duchenne clinics and the physicians and support staff that interact with families
• Coordinate with the CureDuchenne Link team to work effectively in presenting our combined programs to health care providers and biotech and pharmaceutical companies.

CureDuchenne Community Events

• Assist team members with events and moderate Q&A/panels at workshops
• Oversee yearly CureDuchenne Cares events: scheduling, staffing, travel, event agendas, speakers, and resource fair exhibitors
• Meet with local families before and after events to engage the community, especially newly diagnosed families
• Attend multiple CureDuchenne family events and rotate speaking and managing the events with team members
• Present at CureDuchenne events and other conferences and meetings
• Act as emcee and be the face of CureDuchenne at our national conference, FUTURES

Other

• Track event attendance metrics and deliver community engagement impact reports at the conclusion of the year
• Plan and moderate educational/industry webinars for the community, and delegate reporting to community engagement events staff
• Aides in the management of family, sponsor, and HCP data/contacts in Salesforce
• Supports grant writing initiatives at CureDuchenne

Qualifications

• Track record of increasing engagement through personal outreach and utilizing in-person meetings, email communications, and social media.
• Exceptional public speaking is required
• BA minimum
• Minimum 5 years experience in a leadership role, including managing a team and having budget responsibility
• Well versed in Salesforce or other CRM systems
• Must posses a mix of compassion, passion and business acumen
• Experience in creating sponsorship packages and generating revenue through event sponsorship
• 5-10 years experience community engagement and/or advocacy in biotech, pharmaceutical, or disease specific non-profit organizations

Travel nationally, 30-40%

CureDuchenne Offers

• Medical, Dental and Vision Insurance
• ·Matched Retirement Program
• ·Beautiful Office in Newport Beach
• ·Paid Sick and Vacation

CureDuchenne does not discriminate based on race, color, religion, gender, age, national origin, disability, marital status, sexual orientation, or military status in any of its activities or operations.

To apply or for more information, please contact:

Gina Scaccio at Joule, Inc.

215.647.6041

[email protected]