Marketing and Development Manager

Erdheim-Chester Disease Global Alliance

Erdheim-Chester Disease (ECD) is an extremely rare disorder that can affect many different organs of the body. The ECD Global Alliance is dedicated to the awareness, support, education, and research related to Erdheim-Chester Disease. The organization works with the global community to accomplish the following:

· Raise awareness of ECD.

· Provide support to those affected by the disease.

· Advocate for and support research programs.

· Share educational material and facilitate information sharing among interested parties regarding ECD.

Develop Marketing and Communications strategies in conjunction with the Executive Director to reach core constituencies of Erdheim-Chester Disease Global Alliance (ECDGA) with the goal of raising visibility and support to meet the Alliance’s mission. Lead implementation strategies for the following constituencies:

● Patients and Families

o Provide education on living with the disease and caring for a loved one with the disease.

o Promote support programs such as Patient Navigator, Virtual Chats and Webinars

o Coordinate the annual in-person Patient and Family Gathering (held in conjunction with the Medical Symposium).

● Physicians

o Share information that promotes earlier diagnosis of ECD.

o Share information about the impact and treatment of the disease.

o Promote programs that support research in the field, including the research grant program of ECDGA and allied organizations.

o Coordinate the annual in person Medical Symposium (held in conjunction with the Patient Family Gathering).

o Coordinate the organization’s presence at 2-5 medical conferences annually.

● Donors

o Develop and implement fundraising strategies for continuing and new donors.

o Develop and support stewardship efforts to build relationships and thank donors.

● Partner agencies

o Provide communications support to develop and maintain relationships with other rare disease organizations.

o Provide communications support to develop and maintain relationships with pharmaceutical companies working in ECD and similar diseases.

Key Communications responsibilities:

● Draft and distribute press releases, letters, email blasts.

● Maintain the website and take the staff lead on strategy to create a new website in the next 1-2 years.

● Produce the quarterly newsletter keeping all constituencies updated and engaged.

● Manage social media accountsincluding Facebook, Linked In, Instagram, Twitter and others as may be appropriate. Share timely posts, respond to comments and questions, share relevant posts of partners and physicians.

Develop a communications calendar for each of the constituencies.

Track communications and responses when appropriate. Work with the data manager to evaluate strategies including effectiveness of communications with open and read rates, and fundraising strategies for the organization overall including number and amounts of donations by categories and other related measures.

This full-time position reports to the Executive Director. Qualified candidates can choose to work remotely or on-site in DeRidder, LA.

Qualifications:

3-5 years’ experience in communications serving as a Fundraising/Development Coordinator, Event Coordinator, Political Campaign staff or Marketing and Communications staff.

Track record of managing multiple projects and keeping them on schedule and on budget. Strong written and interpersonal communications skills.

Salary Range: $45,000-50,000

Job Type: Full-time

Pay: $45,000.00 - $50,000.00 per year

Benefits:

• Paid time off

Schedule:

• 8 hour shift

Experience:

• Marketing: 1 year (Preferred)

Work Location: Remote

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