Rare diseases

Rare disease subgroup – National Neurological Alliance

The most recent rare diseases subgroup meeting included a Q&A with Adrian Williams, Chair of the Neurosciences Clinical Reference Group.

Topics discussed included how the barriers to telehealth/virtual appointments for people with rare diseases can be overcome (include tariff based objections), and ensuring the draft neurology service specification will result in services that meet the needs of patients with rarer conditions. This includes the possibility of using the spec to ensure neurologists signposting patients to appropriate information. Other recent activities for the group include contacting benefits assessment providers about information for assessors on rare neurological disease, and exploring how to support The Genetic Alliance’s work.

APPG on Rare, Genetic and Undiagnosed Conditions

It has been announced this week that Ben Howlett MP, Chair of the APPG on Rare, Genetic and Undiagnosed Conditions, will be leading a Westminster Hall debate on ‘Implementing the UK Strategy for Rare Diseases’ on Tuesday 28 March, from 4.30 – 5.30 p.m. The debate represents an opportunity for MPs to highlight issues related to rare diseases. Members may wish to provide briefings to Ben Howlett or other interested MPs on issues that you would like to be raised with the Department of Health.

The Genetic Alliance UK acts as the group’s secretariat:https://www.geneticalliance.org.uk/appg