We're a charity that supports children with Nonketotic Hyperglycinemia (NKH), a rare and terminal metabolic disorder. We're looking for someone to help us collate a collection of published research about NKH, mark whether it's reliable/trustworthy and summarise any signfiicance in a sentence.
This means:
- Searching for published papers about Nonketotic Hyperglycinemia/NKH/Glycine Encephalopathy
- Adding it to a spreadsheet
- Reading the research paper (ideally the whole paper, and not just the abstract)
- Noting the papers trustworthiness and anything of significance
- Writing a sentence summary
If you're into metabolic disorders, biomed based research or helping with rare disease, this is the volunteer position for you!
You'll also be supporting a micro charity be more effective (important, as we're the only charity doing what we're doing!) and in the long run, have a real impact on how parents with NKH can advocate for their children, literally improving quality of life. NKH is very rare, and often the medical professionals who support a child with NKH have never heard of it. It is left to parents to educate those who support their child, and this will be an important resource for them to do so.
It's a very specific job, and we're a small charity, but, in the world of academic speak, you will:
- Develop strong research and analytical skills by searching for NKH-related studies, critically evaluating scientific papers, and assessing their reliability.
- Gain biomedical knowledge about Nonketotic Hyperglycinemia and rare metabolic disorders while learning how research informs real-world clinical understanding.
- Build communication skills by summarising complex scientific findings into clear, accessible explanations for families and professionals.
- Experience working with a mission-driven micro-charity, seeing how evidence-based resources directly support advocacy and improve quality of life for children with rare diseases.
- Someone detail-oriented, curious, and comfortable reading scientific or technical material.
- A person who is motivated by helping others, especially families affected by rare diseases.
- Ideally a student or individual interested in biomedical science, healthcare, research, or related fields—but no prior expertise is required, just willingness to give it a go.
- Someone who can work independently, stay organised, and communicate findings clearly.
- Volunteers must be 18+, have access to a computer and the internet.
- This is also a remote/online role, so volunteers can participate from anywhere.
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