Fabry Disease News Columnist

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BioNews, Inc. a digital news company dedicated to creating communities for patients with rare diseases and their caregivers, is looking for members of the Fabry community to join our freelance staff of patient and caregiver columnists on  Fabry Disease News.

A BioNews columnist is a patient or caregiver who shares about life with rare disease. Through personal essay or column format, they write to inform, inspire, empathize, and advise. Their audience includes patients, caregivers, medical teams, and researchers. Columnists also write to a general audience interested in learning how to improve society’s understanding and treatment of disease/disability communities.

All columns are reviewed with a critical eye by professional editors who will work with columnists to smooth rough spots and help the columnist grow as a writer. This is a contract position.

Please note you MUST be a member of the Fabry Community — patient or caregiver — in order to apply for this position. 

Responsibilities and Duties

  • Fulfill 1x weekly deadlines as agreed upon with director of community content.
  • Communicate efficiently with manager and editors.
  • Submit 400-800-word drafts that adhere to BioNews policies and procedures.
  • Aside from exceptions, drafts should not take more than 45 minutes to edit.
  • Fulfill revisions as requested by editors in a timely manner.
  • Complete training assigned by BioNews HR.

Experience Required

  • Prior experience with writing for an audience.
  • At least three months’ direct experience with having or caring for someone with Fabry disease.
  • Caregivers must be direct relatives, guardians, or spouses.

Experience Preferred 

  • Experience in being professionally edited for publication.
  • Experienced in generating a blog or column.
  • Participation in support groups, internet forums, or community groups relevant to Fabry disease.

Knowledge Required

  • Fundamentals of how Fabry disease works.

Knowledge Preferred

  • The content needs or wants of the Fabry community.

Skills Required

  • A swift and independent learner of internet technology.
  • A creative mind capable of regularly generating unique content that appeals to target audiences.
  • Time management.
  • Advanced creative writing.

Skills Preferred

  • Experience in using WordPress for content creation.
  • Experience with the Slack communication app.

Abilities Required

  • Internet access and use.
  • Native or fluent English writing and reading abilities.

Who is BioNews www.bionews.com
BioNews is a leading online health, science, publication, and research company that exists for one purpose: to serve the patient living with a rare disease. We do this by connecting them with current, trusted, and relevant news and information. This content is delivered regularly and provided by actual patients as well as professional journalists, writers, editors, scientists, and experienced media executives.  Our end customers are truly patients living with rare diseases.

BioNews Vision
To empower, inspire, and champion the patient voice as the preeminent resource that serves to engage, inform, and connect the global rare disease community.

BioNews Purpose
We connect rare disease communities by providing a unified and distinctive space to engage, educate, and empower those affected by rare diseases to help improve patient health and quality of life.

Values: R.A.R.E.


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