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Please check out our current employment opportunities. All Angioma Alliance positions are home-based.

Health Equity Program Development and Outreach Specialist

The Angioma Alliance Health Equity Program Development and Outreach Specialist is an experienced diversity leader, social scientist, and grassroots organizer who will lead equity, diversity, & inclusion efforts both within our organization and in our targeted outreach programs.

This is a home-based, full-time exempt position with flexible scheduling. There will be some travel after COVID-19, no more than 20 days/year. This position reports to the Angioma Alliance CEO.

ABOUT ANGIOMA ALLIANCE

Angioma Alliance was founded in 2002 to inform, support, and mobilize those affected by cerebral cavernous angioma (CCM) and drive research. We are the only patient advocacy organization for this rare disease in the United States. Our work is overseen by a Scientific Advisory Board comprised of national and international scientific and medical experts.

RESPONSIBILITIES

In our outreach efforts, the Health Equity Program Development and Outreach Specialist will lead our new, unique Breaking Barriers initiative, a grant-funded program specifically targeted to find and improve care for Black CCM patients and encourage research participation. The Health Equity Program Development and Outreach Specialist will:

  1. Connect and build community structure among known Black CCM patients and disseminate information about the community to medical providers, etc.
  2. Work to understand and document the diagnostic and care challenges faced by Black patients through structured patient interviews, in collaboration with our existing CCM Clinical Centers.
  3. Develop partnerships with larger disease organizations and with other organizations and institutions that are focused on health equity to increase awareness and break barriers, particularly those whose interests include rare disease, stroke, or epilepsy.
  4. Potentially create pilot programs in several urban hospitals, in partnership with our existing CCM Clinical Centers, to increase timely diagnosis and care.
  5. Document the activities and progress of the initiative as a model for other rare disease organizations.
  6. Seek additional funding opportunities.

Within our small organization, the Health Equity Program Development and Outreach Specialist will:

  1. Examine existing Angioma Alliance programs through a DEI lens to identify possible improvements.
  2. Develop a comprehensive organization-wide strategic diversity and inclusion plan.
  3. Arrange training programs for staff, Board, and volunteers.

Finally, the Health Equity Program Development and Outreach Specialist will support other health equity outreach. Examples could include:

  1. Work with CCM researchers and pharmaceutical companies to develop DEI plans for clinical research and clinical trial recruitment.
  2. Establish DEI criteria for Angioma Alliance CCM Clinical Centers nationwide and assess compliance. We currently have 8 CCM Clinical Centers.
  3. Interface with WIC and the Departments of Health in Southwestern states, where CCM is highly prevalent in Hispanic families, to disseminate information about a CCM-healthy preservative-free diet and work toward support of emulsifier-free infant feeding options.
  4. Address language barriers within Angioma Alliance programming.
  5. Develop and implement a plan to better integrate patients with serious disability and their families into our activities.

REQUIREMENTS

  1. Bachelor’s degree or higher, preferably in public health or a social science field.
  2. A minimum of 3 years of demonstrated health equity program development experience, including grassroots organizing and building partnerships with patients, non-profit organizations, government, and medical professionals.
  3. Excellent program management, written communication, public speaking, active listening, and interviewing skills.
  4. Proficiency with social media in a professional capacity.
  5. Demonstrated ability to work independently and maintain time management, self-direction, and organization. This is a home-based position with a direct supervisor located in Virginia. The position will remain home-based after the pandemic.
  6. Demonstrated ability to work as a team member in virtual groups.

EMPLOYMENT AND COMPENSATION

  1. This is a full-time exempt telecommuting position with flexible scheduling.
  2. After COVID, the position may include overnight travel within the United States, up to 20 days/year, to develop relationships in targeted cities.
  3. Salary is commensurate with experience.
  4. Angioma Alliance offers a medical insurance stipend and Simple IRA retirement plan.
  5. Angioma Alliance will provide financial support for continuing education, including professional certificate programs.
  6. Angioma Alliance will provide a stipend for telecommuting to offset expenditures for cellphone service and broadband internet and will provide equipment as needed.

APPLICATION

Please email the following to Connie Lee at clee@angioma.org. The position will be posted until filled.

  • Resume with salary expectations.
  • Cover letter explaining your desire to work for Angioma Alliance and why your experience qualifies you for the position.

Updated 12/29/2020