Job description
Position Objective:
Provide information and resources to affected individuals, their families and friends, and other interested parties seeking a diagnosis, thereby increasing the understanding of Marfan, Vascular Ehlers-Danlos (VEDS), Loeys-Dietz syndromes (LDS), and other related genetic aortic and vascular conditions.- Connect affected individuals and their family members to other affected individuals and family members with similar features and/or psychosocial issues to provide peer support.
- Develop and maintain strong relationships with physicians and other allied health professionals to assist patients and other interested parties in treating Marfan, VEDS, LDS, and other related genetic aortic and vascular conditions.
Essential Functions:
In conjunction with the Director of the Help and Resource Center (HRC):
- Communicate directly with individuals and family members in our community about issues and concerns related to their medical, psychosocial, and other issues, whether by phone or email.
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- Follow up with individuals and family members who have contacted the HRC by phone and email. Ongoing communication is essential, whether it be related to referrals or more information, or the need to respond to other questions/concerns.
- Maintain all records of interactions (phone or email) in Salesforce.
- Maintain an organized system of responding to emails and follow-up phone calls to those who leave voicemail messages.
- Facilitate virtual support groups (zoom) with individuals and family members in our community.
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- Follow-up by email and/or phone regarding questions and concerns arising during support group meetings.
- Evaluate support groups that can are offered to the community. Engage in shared decision-making and utilize community resources for new support groups.
- Connect other colleagues as appropriate with those who reach out for requests regarding programs, social services, walks, fundraising, donations, etc.
- Communicate and obtain the necessary information to write disability letters, appeal letters, and VISA letters for those in our community upon their request.
- Provide an end-of-the-month summary to the CSO and COO of open, working, the response received, closed cases in Salesforce, and any other concerns/questions for the month.
- Maintain ongoing relationships with the MDs on the Professional Advisory Board as well as the medical directors and other healthcare professionals at the clinics/centers and participate in institutional directory applications interviews.
- Update the individual MD referral system, which is currently in G drive/SharePoint.
- Handle international inquiries and develop international connections/resources for those who contact us from other countries. Consider having designated liaisons in other countries.
- Create a Nurse’s Corner in the newsletter for each issue and/or a regular blog.
Competencies:
Strong interpersonal verbal, communication, and writing/editing skills.- Demonstrable interest and commitment to the specific vision and mission of the Foundation.
- Ability to take direction, work well under pressure, and adapt to changing situations on a daily basis.
- Sincere commitment to work collaboratively with all constituent groups, including staff, board members, volunteers, donors, program participants, and other supporters.
- Ability to convey empathy, kindness, and strong support to community members.
Education & Experience:
Education:
- Bachelor’s degree in nursing or similar medical field
- 3+ years of relevant professional experience in nursing or related field.
- Bilingual (English/Spanish), required.
- Experience with Salesforce preferred.
- Experience providing medical information and resources to consumers.
- Knowledge of connective tissue conditions, a plus
- Call center/metric-driven environment work experience and understanding preferred.
- Comfortable working in a small organization with a roll-up-your-sleeves environment.
- Proficiency in Microsoft Office, keyboarding skills, and strong technical aptitude.
Work Environment and Travel:
Port Washington, NY location and/or remote
Travel is required to Foundation and community events as needed.
Other Duties:
The Marfan Foundation expects all employees to conform to the expectations outlined in the Employee Manual. Please note that this job description is not designed to cover or contain a comprehensive listing of activities, duties, or responsibilities required of the employee for this job. Duties, responsibilities, and activities may change at any time, with or without notice.
Benefits:
The Marfan Foundation recognizes that financial rewards and excellent benefits are important aspects of an ideal job. That is why we offer competitive financial compensation and a benefits package. The Marfan Foundation’s benefit package includes:
- Work-Life balance, Paid Time Off
- Medical, Dental, Vision Insurance, Long-Term Disability, and Life Insurance
- Flexible Spending Account (FSA)/Health Reimbursement Account (HRA)/Lifestyle Spending Account
EEO Statement:
The Marfan Foundation is an equal-opportunity employer. We do not discriminate based on race, religion, color, sex, gender identity, gender expression, sexual orientation, age, military and veteran status, medical condition, or any protected category prohibited by local, state, or federal laws. All employment is decided based on qualifications, merit, and business need. We are committed to developing and retaining the most talented people that represents a variety of backgrounds, perspectives, and skills.
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