They affect people of all ages, genders, ethnicities and locations. However, the nature of these conditions means that people can often face a range of issues, such as recognising symptoms, […]

Date & Time: Tuesday 29th June 2021 at 2pm Platform: virtual meeting via Zoom A great opportunity to alert, and involve, your MP to the needs of patients with rare […]

Full latest update online can be found here: https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19 Below is the exact text provided by the government. Mainly, announcing that shielding is paused. However, we still advise to be […]

Research FOR Patients -For an informed and empowered opinion- Have you made your clinical paper accessible yet? Thalassemia and MDS are both rare diseases that prevent a person from producing […]

Platelets are disc-shaped elements in the blood that assist in blood clotting. During normal blood clotting, the platelets clump together (aggregate). A normal platelet count in a healthy individual is […]

Thank you to the organisers, Stragglers Running Club, for a terrific event, in particular Kevin, and all the marshals.  As well as Sport Systems teams. Thanks to the wonderful runners, […]

Following news on the extremely rare risk of blood clots/thrombosis in patients who had the Astra Zeneca vaccine, we are posting several statements by the MHRA, JCVI and BSH on […]

Thousands of people with cancer can benefit from ‘Covid friendly’ treatments from home, the NHS announced today. More than 30 different drugs are available to treat patients, offering benefits such […]

The Medicines and Healthcare products Regulatory Agency (MHRA), the agency responsible for ensuring that medicines work and are safe, is organising a online meeting on Wednesday 31 March from 10:00 – 11:30am […]

Now that most people in the Clinically Extremely Vulnerable Group have been vaccinated, it’s vital that we report any side effects from the vaccines. This is even more important for […]