Kim Johnson has asked ministers to set out steps being taken to improve research into and treatment for the rare genetic condition GNB1.
The Labour MP for Liverpool Riverside tabled the written parliamentary question on 9 October. A health department response is due on 13 October.
Her question asks separately about research and treatment, seeking an account of both scientific work and support available to affected patients.
The question does not announce new funding or a treatment breakthrough. It asks the Government to explain its current activity and any intended next steps.
The ministerial answer will provide a test of how rare conditions such as GNB1 are reflected in research priorities and NHS care.
