August 11, 2023

We’re looking to hire a passionate and experienced Community Affairs Officer to join our team during this crucial period of growth in our community.

Position: Part-time Community Affairs Officer
Estimated 30 hours/week; Remote position.

To apply, please send your resume along with three writing samples (with your byline) and your salary requirements to Natacha Pires at


Founded in 2005, the Adult Polyglucosan Body Disease (APBD) Research Foundation is the only 501(c)(3) non-profit committed to supporting patients and families impacted by APBD and finding treatments and a cure for this debilitating rare disease. Our mission is four-fold: improve the diagnosis and treatment of APBD; support affected individuals and families; increase awareness of APBD among health professionals and the public; and facilitate the translation of research into treatments and cures for APBD. To learn more about APBD and the Foundation, visit

We are seeking a Community Affairs Officer to help advance the Foundation’s mission and be a part of a growing team working to find APBD treatments and a cure. Working with the Executive Director, the Community Affairs Officer is responsible for the planning and implementation of the Foundation’s outreach programs that engage and strengthen relationships with community stakeholders. The candidate is also responsible for the Foundation’s communications and development initiatives, including fundraising campaigns, Foundation events, and grant proposals. Writing and communications skills are paramount.

This is a part-time position requiring a suitable home office equipped with proper equipment and technology for virtual work and online meetings. This is an ideal job for individuals seeking to make an impact in the lives of people impacted by APBD and allied diseases.

Essential Job Functions:

1. Communications:

  • Drive multi-channel communications and engagement strategy for outreach to the APBD community
  • Develop, design, and distribute a monthly e-newsletter and other communications depending on program needs
  • Maintain an editorial calendar to support communications and fundraising efforts
  • Generate a broad range of internal and external communications to support the Foundation’s programs

2. Development:

  • Work with the executive director to execute on the Fund Development Plan
  • Identify and engage current and prospective donors (individuals, foundations, corporations, and other organizations) with an end goal to acquire major gifts from new donors and to renew and upgrade gifts from current donors
  • Participate in the drafting and editing of grant proposals to support operations and capacity-building. This includes tracking opportunities and managing timelines.
  • Lead the planning and implementation of fundraising campaigns and stewardship opportunities

The incumbent will use their skills to support current programs, including: the annual Million Dollar Bike Ride fundraiser for research, the Rare Disease Day awareness-building program, monthly volunteer-led Patient and Caregiver Chats, and periodic scientific workshops.


The ideal candidate is a dynamic, digital/tech savvy, creative team member who takes initiative, has outstanding relationship-building and communications skills, and is passionate about making a difference in the lives of those impacted by rare diseases.

  • At least five years’ experience in programs, communications, and development roles in nonprofit patient advocacy organizations
  • Exceptional writing and proofreading skills and the ability to convert information into effective and persuasive messaging, as well as draft and edit communications for a wide range of audiences
  • A successful record of cold calling prospective donors (foundations, corporations, individuals) and pitching for funding support
  • Highly organized project management abilities with capacity for multi-tasking simultaneous, inter-connected programs
  • Experienced with identifying and cultivating new donors and collaborations
  • Skilled in using Constant Contact, Canva, Microsoft Office, Adobe Photoshop, SquareSpace, DonorPerfect, and social media platforms
  • Ability to work independently, in a team, and effectively in a remote setting.