PMR GCA Scotland
Support for Polymyalgia and Giant Cell Arteritis Sufferers in Scotland
Dr Sarah Mackie is an established friend and supporter of the UK charities and she is in the process of compiling a leaflet about prednisolone doses in the event of corona virus infection. She would welcome feedback from PMR/GCA patients on the style and tone of the draft document. If you wish to assist in this project please follow the links: Document link: here
Feedback link: If appropriate, Sarah would be grateful if rheumatology patients taking long-term steroids who have read this leaflet could send feedback via the following survey link which their designer Professor Maria Lonsdale has put together. This is an anonymous survey and will be used to determine whether a revision is necessary on 1st June. Survey is found here
SPRING NEWSLETTERIssue 30 (Spring 2020) of NewsWire has been posted and is available as a download HERE. Paper copies were posted on Thursday 30th April. If your copy has not arrived yet, please email Secretary@pmrgcascotland.com.
AGM 2020 – Held by email and post
The 2020 Annual General Meeting of PMR-GCA Scotland was held at the email and post on Friday 20th March 2020.
Following the delay of the conference planned for the Queens Hotel Dundee on Friday 20th March 2020, the Trustees decided to hold the AGM by email and post. The secretary contacted by email or post, the people planning to attend the AGM to inform them of the postponement of the Conference and the new plan for the AGM. The Secretary also contacted all members with a valid email address to notify them of the plan. The contacts were asked to vote on the AGM resolutions by email or post. 50 replies were received. Thank you to all you contributed.
We have decided to delay the conference for a year and hope that life has returned to normal by then. The date is Friday 19th March 2021 in Queens Hotel Dundee. More details will follow in due course.
NHS NATIONAL SERVICES SCOTLAND Request
GCA is classified as a Rare Disease by the NHS. Please read the invitation to take part in the research study described below.
CONCORD (Coordinated Care of Rare Diseases) is a research study looking at how care of people with rare diseases is coordinated in the UK and how patients, families and healthcare professionals who treat rare diseases would like care to be coordinated.
The research team are recruiting patients, parents and carers for and are keen to hear a Scottish perspective. Please see here for details.
Note that it is possible that this study has closed. It is not obvious from the link but there is a contact available if you want to try to join.
Issue 30 (Spring 2020) of NewsWire is available as a download HERE. Paper copies were posted on Thursday 30th April. If your copy has not arrived yet, please email Secretary@pmrgcascotland.com.