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Part-time writer / editor position

The right candidate is curious, loves to write, and has proven editorial and writing experience. This is a work from home position, but also requires in-person meetings and events from time-to-time (~20%) in New London County, Connecticut, and for occasional travel to national events and conferences. 

Who we are 

We are a small, nimble organization supporting our global rare disease community of those living with Leber congenital amaurosis, a rare inherited retinal disease that causes blindness or severe low vision from birth. Our team is based in southeastern Connecticut and works remotely. 

We are an organization that adeptly moves between advocacy and science, keeping the people we serve — the LCA and broader rare inherited retinal disease community — in focus each step of the way. We are bridging an unnecessary chasm between the people that inform the science and the science that transforms people. Hope is born of connecting these two sides of the same story.


What we need

We are seeking a talented, experienced writer to support us part time as a staff writer and editor. This position is critical to achieving our mission, which includes sharing the experiences of those living with LCA by telling their stories on our website and in our newsletter, and by bringing a deeper level of understanding of the science powering treatments, the ecosystem and processes involved in bringing those treatments to market, and the exciting research advances underway that motivate and drive our community. 

This person will work with the Hope in Focus team to be the friendly, informative, and energetic voice in the LCA community, representing hope, optimism, and caring as we advocate for treatments for blindness. 


What the Hope in Focus Staff Writer will do:

  1. Manage content and editing of a quarterly newsletter
    • Compile and edit content for newsletter and e-news
    • Draft the newsletter Letter from the Founder 
    • Compile newsletter calendar of events
  2. Proofread and edit monthly e-newsletter
  3. Produce two to three stories a month to share with our community on our website and in our newsletter
    • Seek out new stories and story ideas, working with the HIF team
    • Interview those living with or caring for someone living with LCA to share their experience and perspectives 
    • Interview other LCA community members from industry, regulatory, and research groups to develop stories that highlight their perspectives and provide information 
    • Edit coverage of events or conferences attended by other team members
  4. Support stewardship of marketing and donor relationships 
    • Write advances, news releases, and recaps for three to five events per year, including Dinner in the Dark and Rare Disease Day 
    • Support development of annual campaign materials 
    • Create copy for event materials and website
    • Review and proofread key communications to partners, sponsors, donors, and LCA community 
    • Help maintain a consistent voice across marketing and donor communications 
  5. You may also 
    • Develop talking points and scripts for events, meetings, videos, and other occasions
    • Review, edit, and proofread communications drafted by colleagues


  • Proven editorial and writing experience, preferably in a nonprofit and/or science-related field
  • Degree in communications, journalism, or English 
  • Able to meet deadlines and juggle multiple tasks/stories simultaneously
  • Comfortable working independently and with a small team
  • Familiar with AP style
  • Proficient in Google Suite
  • Excellent relationship-building skills
  • Loves to write and expresses ideas clearly and logically

The ideal candidate also is

  • Mission-driven and excited to learn about our community and rare-disease advocacy
  • Curious, persistent, and interested in a broad range of knowledge
  • Empathetic, self-aware, and enjoys speaking with people
  • Committed to diversity, equity, access, and inclusion
  • Thorough, and really cares about all those little details 

Apply now on Indeed 

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