Other Resources

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.

Read here the Latest Information on COVID-19 & Haemoglobinopathies in the UK HERE

The United States Department of Health and Human Services (HHS), in partnership with the American Society of Hematology (ASH) and SickleinAfrica, and with the participation of the World Health Organization (WHO), jointly hosted a webinar on strengthening Sickle Cell Disease (SCD) efforts during the COVID-19 pandemic and beyond, on June 29, 2020.

The 90-minute webinar highlighted current knowledge on the impact of COVID-19 on health care systems and access to care for individuals living with SCD.

Watch the Full Webinar HERE

View the Webinar Slides HERE

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 HERE

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

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.

Watch the EBMT COVID-19 Webinars HERE

• Premature aging of the immune system affects the response to SARS-CoV-2 mRNA vaccine in β-Thalassemia: additional dose role
• Understanding the impact of COVID-19 pandemic on health-related quality of life amongst Iranian patients with beta-thalassemia major: a grounded theory
• β-Thalassemia Major and Coronavirus-19, Mortality and Morbidity: a Systematic Review Study
• Impact of COVID-19 pandemic on rare diseases: A case study on thalassaemia patients in Bangladesh
• Transfusion-dependent beta thalassemia in Afghanistan: current evidence amid COVID-19 and future recommendations
• Prevalence and mortality in b-thalassaemias due to outbreak of novel coronavirus disease (COVID-19): the nationwide Iranian experience
• Blood supply challenges & transfusion care of patients with haemoglobinopathies during COVID-19 pandemic
• Care of patients with hemoglobin disorders during the COVID-19 pandemic: An overview of recommendations
• Preliminary Data on COVID-19 in Patients with Hemoglobinopathies: A Multicenter ICET-A Study
• A Case of COVID-19 in a Patient with Asymptomatic Hemoglobin D Thalassemia and Glucose-6-Phosphate Dehydrogenase Deficiency
• Beta-thalassemia may protect against COVID 19
• Effects of the COVID-19 pandemic on supply and use of blood for transfusion
• COVID-19: beta-thalassemia subjects immunised?
• The medical concerns of patients with thalassemias at the time of COVID-19 outbreak: The personal experience and the international recommendations
• Implications of SARSr-CoV 2 infection in thalassemias: Do patients fall into the “high clinical risk” category?
• COVID‐19 Infection and Sickle Cell Disease: A UK Centre Experience
• Vaso‐occlusive crisis and acute chest syndrome in sickle cell disease due to 2019 novel coronavirus disease (COVID ‐19)
• Rare anaemias, sickle-cell disease and COVID-19