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General Contact Information:

Fanconi Anemia Research Fund, Inc.
1801 Willamette Street, Suite 200
Eugene, OR 97401

Telephone: 541-687-4658
Family Support Toll-Free Line (in United States):
1-888-FANCONI  or   1-888-326-2664
Fax: 541-687-0548
E-mail: info@fanconi.org

Hours of Operation:

Monday - Friday, 8 am - 5 pm, Pacific Time

Holidays:

None currently.

Staff:

Executive Director: Laura Hays, PhD, laura@fanconi.org

Interim Director of Family Support Services: Suzanne Planck, suzanne@fanconi.org

Special Projects Coordinator: Cynthia Freeman, cynthia@fanconi.org

Executive and Family Support Assistant: Janae Peverill, janae@fanconi.org

Bookkeeper, Christina Lay, accounting@fanconi.org

 

Postions Available:

Communications Coordinator/ Meeting Planner (1.0 FTE)

Responsibilities:
The CC/MP is responsible for the Fanconi Anemia Research Fund’s (FARF) internal and external communications, including grant writing, and conference planning.   The position is key in presenting the FARF professionally and positively to diverse audiences in a way that is supports and advances FARF’s mission and strategic directions.  Audiences include families affected by Fanconi Anemia, research scientists, and the FARF board of directors.
FARF is a non-profit dedicated to finding effective treatments and a cure for the rare genetic disease Fanconi anemia and supporting affected families worldwide.

Major Duties: 
1. Oversees all external and internal communications; develops communications strategies tailored for specific audiences and projects; researches and develops new communications tools, including use of social media and web resources.

2. Manages the production of three annual newsletters and other publications; plans and writes articles; researches background material; edits submissions by others; and coordinates with graphic designer and printing.

3. Maintains FARF website, including creating new postings as needed and updating content and design to reflect best practices in website graphics and display.

4. Monitors, updates and coordinates FARF’s social network media and develops new approaches to communicating with social media as the technology evolves;

5. Prepares grant proposals and coordinates submissions; researches potential grantors.

6. Directs all planning and logistics for FARF conferences and meetings, including the annual scientific symposium and family meetings; works with venue staff; coordinates with speakers and presenters; ensures high-quality conference materials are prepared and available in a timely fashion.

Qualifications:

A minimum of three years’ experience in communications field that includes drafting and editing material for wide distribution.  In addition, applicant will have:
- Excellent written, organizational and verbal communication skills;
- Strong interpersonal skills and the ability to form effective working relationships with a wide range of constituents and FARF staff;
- Proficiency with website maintenance and development software; experience in managing a website preferable;
- Understanding of social networking tools such as FaceBook and Twitter and ability to use them effectively in representing the organization;
- Proficiency with InDesign, other graphics software, and/or other Microsoft Office programs;
- Experience in planning large conferences;
- Experience working with non-profits desirable.

Position requires occasional travel to conferences and meetings. 

Salary is commensurate with experience.  Excellent health benefits and retirement plan.

Please send cover letter, resume and samples of writing to employment@fanconi.org.  

FARF is an equal opportunity, affirmative action employer committed to cultural diversity and compliance with the Americans with Disability Act (ADA)

 

Director of Family Support Services

Responsibilities

• Oversees all family support and related services, publications, communications and meetings.
• Provides telephonic, letter, and in-person consultation and education for families affected by Fanconi anemia, their relatives, and caring friends.
• Understands Fanconi anemia and effectively communicates information about the medical resources available to FA patients.
• Understands the psychological and social aspects of living with a fatal disease and provides effective consultation to FA families regarding those aspects of the disease.
• Maintains effective relationships with families, physicians, board members and those others with whom the Fund works;
• Directs planning and implementation of the annual FA Family Meeting and Meetings for Adults with FA.
• Moderates and responds to all online FA support groups.
• Maintains current and complete family information files;
• Develops and distributes educational tools and bulletins as needed; 
• Represents the Fund during conferences and scientific symposia as needed.
• Oversees production of the FA Family Directory, Resource Guide, FA Courier and other publications annually.
• Encourages families to take part in fundraising efforts and provides assistance with those efforts.
• Assists in the writing and production of the FA Family and donor newsletters.
• Demonstrates commitment to the mission of the Fanconi Anemia Research Fund.
• Meets deadlines and attends to detail.
• Maintains a neat and professional appearance.
• Shows initiative in staying abreast of latest research and treatment developments.
• Ad hoc duties.
• Supervises the Family Support Assistant/Special Projects Coordinator and interns.

Qualifications:

• Ability to understand Fanconi anemia, its physical and psychological manifestations, and its treatment options.
• Competency and speed in using Microsoft Office programs, Microsoft Word, Access, and Excel applications.
• Ability to use the internet to research information regarding Fanconi anemia.
• Ability to write clearly and persuasively, with correct spelling and grammar.
• Ability to communicate orally in an effective, persuasive, and compassionate manner.
• Ability to travel away from home for two or more consecutive days, two to seven times per year.
• Able to maintain positive composure and high quality performance in a multi-task environment.
• Able to maintain a compassionate, professional demeanor.
• Experience with social media.
• Three years experience in a related field.
• Previous supervisory duties.


Preferred:

• Masters degree in social work, counseling or related field.
• Familiarity with medical terms and information.
• Non-profit or government experience.

*Send resume and cover letter to employment@fanconi.org.

 

The Fanconi Anemia Research Fund is a 501(c)(3) nonprofit organization. All donations are tax-deductible: Tax ID #93-0995453.

of note

Two new full-time positions available: Communications Coordinator and Family Support Director learn more...

The new Guidelines for Diagnosis and Management are now available!! learn more...

Dave Frohnmayer, Co-founder of the Fanconi Anemia Research Fund, has sadly passed away... learn more...

Save the Date: Fanconi Anemia Scientific Symposium September 17-20, Toronto, Canada learn more...