Lowe Syndrome Research Meeting 2023 group photo

Meet the Lowe Syndrome family

25.09.23 When researchers, families, patients and advocates join forces

Lowe syndrome is a rare X-linked genetic disease particularly affecting the eyes, brain and kidneys. In May 2023, in Italy, a conference gathered researchers, clinicians, patient associations and patients from seven countries.  A special contribution was a talk from Paul James, who has Lowe syndrome.  His message was one of seeing the positives, despite the difficulties.  He also highlighted how the language used to describe Lowe syndrome can be improved. New introductions and collaborations were established to propel research forward.  The patient advocates present were informed and equipped to communicate the research needs and funding imperative to patrons and sponsors.  Get a glimpse of the inclusive spirit of the meeting in this new video.

The image above shows Professor Martin Lowe (University of Manchester), Dr Jonathan Gadsby (Gallop Lab) and Dr Jenny Gallop.

Dr Jenny Gallop co-organised the Lowe Syndrome Research Meeting 2023 with Dr Leopoldo Staiano at the Telethon Institute of Genetics and Medicine (TIGEM) in Pozzuoli. The meeting was supported by the Lowe Syndrome Trust UK, Lowe Syndrome Association USA, Associazione Italiana Sindrome di Lowe Italy, and PerkinElmer.