May 20, 2024


We’re looking to hire a passionate and experienced Research Coordinator to join our small team during this crucial period of growth in our community.

Position: Research Coordinator

– estimated 25 hours/week
– remote part-time position
– hourly rate ($55/hour)


To apply, please send your resume and cover letter to Natacha Pires at natacha@apbdrf.org.


Major Duties:

This position is multifaceted and involves engaging in a range of initiatives to support the APBD Research Foundation’s mission. 

Working closely with the executive director, the incumbent will:

  • collaborate with patients, researchers, clinicians, industry representatives, and regulatory agencies to further develop and steward collaborations with the goal of advancing drug development.
  • contribute to the planning and execution of the Foundation’s international Conference (being scheduled for late 2024).
  • convene Patient Chat events where researchers and health experts can engage with patients to share disease insights.
  • serve as writer/editor of articles for the Foundation’s newsletter and website regarding research progress.
  • collaborate with principal investigators as they define our patient registry and natural history study strategy. These efforts will support the overall research agenda and the drug development process.


Skills, Abilities, and Knowledge Required:

  • ability to develop and maintain cooperative working relationships with researchers and clinicians who can help the community move toward its goal of having one or more therapies and cures for APBD and allied disorders.  
  • strong planning and organizational skills.
  • strong communications and interpersonal skills for a wide range of audiences.
  • ability to represent the Foundation at conferences and external meetings.
  • ability to understand and communicate research goals and findings as well as drug development regulatory processes at a level and with needed specificity to inform and engage stakeholders.
  • proven track record of building relationships and establishing and advancing collaborations across and within the non-profit, for-profit, patient advocacy, and academic sectors.


Minimum Requirements:

Relevant experience in drug discovery and/or drug development and clinical trial readiness, ideally in an industry or non-profit setting is required. Experience and/or education in rare genetic diseases, especially neurodegenerative disorders is required. Due to the specialized nature of this position, a master’s degree or equivalent experience in a life sciences or related discipline is preferred.

Note: Most business is conducted from 9am-5pm EST, Mondays through Fridays. There is some flexibility in work scheduling, provided the position’s goals are met. Except during in-person convenings, teleworking is the norm.

About APBD:

With only 200 diagnosed patients around the world, APBD is an ultra-rare, inborn error of metabolism. It is diagnosed most frequently in people of Ashkenazi Jewish ancestry, although it is pan-ethnic. Patients begin experiencing symptoms in their 30s, 40s, and 50s, when they’re in the prime of their lives. As the disease progresses, they lose the ability to walk, stand, stay continent, stay awake, perform at work, and socialize. Patients are robbed of almost every aspect of independence. 

APBD is a devastating, life-changing disease for the patient as well as the family. Providing loving care can be deeply satisfying, but also physically and emotionally exhausting, especially for the primary support partner. 

APBD is caused by the intracellular accumulation of polyglucosan bodies, formed due to glycogen branching enzyme (GBE) deficiency. When there is low activity of the branching enzyme, newly formed glycogen is manufactured incorrectly into long, poorly branched, insoluble strands called polyglucosan bodies (PBs). As these PBs accumulate in nerve cells, muscles, and other tissues, it is thought that they cause a cascade of reactions resulting in progressive neurodegeneration and reduced life expectancy.


About the APBD Research Foundation:

Founded in 2005, the Adult Polyglucosan Body Disease Research Foundation is the leading 501(c)(3) non-profit committed to supporting patients and families impacted by APBD and finding treatments and a cure for this debilitating condition. To learn more about APBD and the Foundation, visit apbdrf.org.

The APBD Research Foundation is an equal opportunity employer. All applicants will be considered for employment without attention to race, color, religion, sex, sexual orientation, gender identity, national origin, veteran, or disability status.