This Rare Disease International statement is a message from the global rare disease community and offers recommendations for policy makers and authorities.
It comprises input from various bodies and patients themselves that reflects the needs, concerns and actions of the rare disease community with regard to the COVID-19 response and recovery.Read the Full RDI Statement
The Sickle Cell Disease Association of America (SCDAA) and its Medical and Research Advisory Committee continue to provide timely updates to their advisories on COVID-19 and sickle cell disease (SCD).
- Health Alert for People with Sickle Cell Disease and their Caregivers – Aimed at helping the community understand COVID-19, how it may affect a person with SCD, and what you can do to help.
- Provider Advisory: An Outline to Decrease Burden and Minimize Morbidity – Guidance for the acute and chronic disease management of individuals with SCD.
- Sub-Saharan African Provider Advisory – Adapted from the general Provider Advisory.
AABB has recently developed a useful toolkit with important information about coronavirus and blood donation, in which examples of optional documents that align with FDA’s communication are provided. These examples could be used by blood collection centers, electing to implement optional precautionary measures for blood donors.
Read the AABB Toolkit HERE.
A presentation by Liz Klings, MD, Center for Excellence in Sickle Cell Disease, The Pulmonary Center, Boston University School of Medicine, with a special focus on the COVID-19 potential implications for sickle cell disease patients.
View the Full Presentation HERE.
As the numbers of people infected by the COVID-19 steadily increases in the UK, the United Kingdom Thalassaemia Society (UKTS) provides patients with advice on how to protect themselves and their families from contracting the virus.
The information included in this »Update on Coronavirus » was provided to the UKTS by the Department of Health, Professors, Consultant Haematologists and Clinical Nurse Specialists at various Centres of Excellence in thalassaemia care in London.
Read the Full Update HERE.
TIF’s Medical Advisor, Dr Michael Angastiniotis, featured in a news report on COVID-19 and Haemoglobinopathies for the Australian online magazine »Hospital & Healthcare ».
Read the Full News Report HERE.
In the context of the COVID-19 pandemic, the EBMT, a collaborative peer network of professionals working in the field of clinical bone marrow transplantation and cellular therapy, has put together a series of webinars with other sister organisations.EBMT COVID-19 Recorded Webinars