DIRECTOR, HELP & RESOUCE CENTER - RN

The Marfan Foundation, Inc.

Port Washington, NY

$80,000 to $92,000 Yearly
Vision , Medical , Dental , Paid Time Off , Life Insurance
Full-Time

Job Description

Position Objective:

The role of the Director Help & Resource Center is to:

Provide information, resources, and support to affected individuals seeking a diagnosis, their families and friends, and other interested parties, thereby increasing the understanding of Marfan syndrome and/or related conditions, increasing diagnosis, and improving quality of life.
Connect affected individuals and their family members to virtual support groups as well as other affected individuals and family members with similar features and/or psychosocial issues to provide peer support.
Develop resources and relationships with physicians and allied health professionals to assist patients and other interested parties in treating Marfan syndrome and related conditions.

Essential Functions:

Help & Resouce Center Director Responsibilities:

Communicate and follow up directly with individuals and family members in our community who have contacted the HRC about issues and concerns related to their medical, psychosocial, and other issues, whether by phone or email. Ongoing communication is essential, whether related to referrals, more information, or the need to respond to other questions/concerns.
Communicate with MDs on the Professional Advisory Board about patient issues/patient referrals as well as with MDs and RNs at clinics/centers.
Convey information received from MDs and other healthcare professionals back to the individual.
Provide individuals and family members with publications, web-based resources, or referrals to institutional directory.
Help individuals and families connect to The Marfan Foundation through, for example, virtual support groups, social media, Walks for Victory, conference, and symposiums.
Maintain all records of interactions (phone or email) in Salesforce.
Maintain an organized system for responding to emails and following up on phone calls from those who leave voicemail messages.
Facilitate virtual support groups (zoom) with individuals and family members in our community.
Follow-up by email and/or phone regarding questions and concerns arising during support group meetings.
Evaluate support groups that 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 contact them with 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.
Research new resources and maintain the resource database/files (e.g., doctors working with MFS patients, lawyers who assist people with disability and insurance cases, places that assist with medically necessary transportation, mental health services in different states, etc.).
Update the MD referral system, which is currently in G drive/Sharepoint.
Work with other mission areas to create new publications for consumers and medical professionals as needed.
In collaboration with the Director of Research, review, disseminate, and analyze Help Center evaluation survey forms to improve/develop the HRC work with the Community.
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.
Attend and participate in foundation events, such as walks, symposiums, special events, and patient conference.
Assist in the patient conference by helping with health fair, facilitating workshops, and reviewing scholarship requests.

Clinic Network:

Encourage clinics to inform patients of the Foundation and its services and distribute Foundation publications to clinics as part of the support services team.
Assist with updating the annual coordinated clinic directory.

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 daily.
A sincere commitment to working 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.
Proficiency with Microsoft Office, understanding of database maintenance and website use.

Education & Experience:

Education:

Bachelor’s degree in nursing – Registered Nurse (RN)
3+ years of relevant professional experience in nursing or related field.

Other Experience:

Bilingual (Spanish), preferred.
Experience with Salesforce required.
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 for a small organization with a roll-up-your-sleeves environment.
Proficiency in Microsoft Office, keyboarding skills, and strong technical aptitude.

Work Environment and Travel:

Remote and/or Port Washington, NY

Works closely with supervisor, other department leaders, and staff.

Very collaborative, team environment

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 this job description is not designed to cover or contain a comprehensive listing of activities, duties, or responsibilities that are 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 great benefits are important aspects of an ideal job. That is why we offer competitive financial compensation and a benefits package. The salary for this position starts at $80K, commensurate with experience. The Marfan Foundation’s benefit package includes:

Work-Life Balance
Medical (EE covered by ER), Dental, Vision Insurance, Long-Term Disability, and Life Insurance
Paid Time Off
Flexible Spending Account (FSA)/Health Reimbursement Account (HRA)/Lifestyle Spending Account and other Options

EEO Statement:

The Marfan Foundation is an equal-opportunity employer. We do not discriminate on the basis of 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 on the basis of 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.