Director of Research
National Foundation for Ectodermal DysplasiasHighlight
Summary
About the Role
About You
- Minimum of three to five years of work experience in related field, e.g. patient advocacy, healthcare research, or rare disease organizations.
- Advanced degree (Master's or Doctorate in Public Health, Health Policy, Life Sciences, Social Sciences, or related field).
- Knowledge of research methodologies or patient-centered research design.
- Exceptional communication skills—ability to engage authentically with scientists, clinicians, families, and funders.
- Strong organizational and project management abilities.
- Collaborative leadership style.
- Genuine empathy and the ability to support families during vulnerable moments.
- Willingness to learn and bring fresh ideas to patient advocacy.
- Conference planning background.
- Grant writing experience.
- Genetic knowledge and experience working in a genetic field.
Benefits
- Competitive salary of $75-85k plus health benefit stipend.
- Flexible spending account (FSA).
- Employee matching IRA.
- Generous paid time off (PTO).
- Professional development support.
- Remote/hybrid work flexibility.
The National Foundation for Ectodermal Dysplasias (NFED) is the worldwide expert on ectodermal dysplasias and the only advocacy organization in the United States dedicated to those living with these disorders. EDUCATION We offer a range of educational resources and events to meet the changing needs of those affected by the different types of ectodermal dysplasias. And, by connecting you with other families like yours, we give you the opportunity to learn from one another. SUPPORT We provide lifelong support for individuals and families affected by ectodermal dysplasias, including: - Offering personalized service and support to families affected by ectodermal dysplasias, particularly those with recently diagnosed children - Helping families understand currently available treatment options - Partnering with doctors and dentists to ensure that the most effective care is being offered - Working with families to find appropriate financial assistance - Helping secure insurance coverage for dental treatment related to ectodermal dysplasias RESEARCH We encourage and support medical, dental, genetic and other ectodermal dysplasia–related research to improve the health and quality of life of everyone living with ectodermal dysplasia. Our ultimate goal is to find a cure. Sign Up for Email - http://eepurl.com/JIjL