The next Thalassemia TeleECHO clinic will be hosted on Wednesday, May 27th at 3 pm EST. There will be a case presentation, group discussion and a short relevant didactic session. We hope to see you there!
To view the previous Echo clinic presentation, ‘Comprehensive Care in Thalassemia: Considerations for Newly Adopted Children’ by Janet Kwiatkowski, please visit https://thal-mar.org/thalassemia-echo-clinics/.
Interested in joining a Thalassemia ECHO clinic?
The Center for Disease Control and Prevention (CDC) advises that individuals with hemoglobin disorders such as sickle cell disease (SCD) and thalassemia may be at higher risk for severe illness from COVID-19.
The CDC recommends individuals with thalassemia consider doing the following:
- Ask their healthcare provider about telemedicine or remote healthcare visits, and knowing when to go to the emergency department.
- Work with their healthcare provider to manage medications and therapies (including hydroxyurea, chelation therapy, blood transfusions, and prescriptions for pain management) and any other health condition they may have (such as diabetes, high blood pressure, and arthritis).
- Let friends and family know about the need for healthy blood donors.
Individuals with thalassemia may be at higher risk since it can lead to multiple organ complications and underlying medical conditions (eg. heart disease, liver disease, iron overload, kidney disease) which may increase the risk of severe illness from COVID-19.
More information about this CDC guidance can be found at: https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/groups-at-higher-risk.html#hemoglobin-disorders
ASH publishes Question and Answers series on management of thalassemia patients during the COVID-19 pandemic.
A case series of 11 thalassemia patients with COVID19 infection in Northern Italy has recently been published. Overall patients did well and non needed mechanical ventilation. Check out the link below for details.
Motta et al, Am J Hematol, 2020 SARS‐CoV‐2 infection in beta thalassemia: preliminary data from the Italian experience. https://doi.org/10.1002/ajh.25840
Need quick references for management of thalassemia patients? Check out the Cooleys Anemia Foundation Thalassemia Management Checklists including guidelines on i) managing transfusions, ii) monitoring iron overload, and iii) monitoring deferasirox therapy. Check out the ThalMAR site at thal-mar.org or click on the link to the right.
We’re delighted to announce the launch of a new initiative called the Mid-Atlantic Region Thalassemia Network (Thal-MAR).
Thal-MAR is a multidisciplinary consortium of health care professionals focused on enhancing knowledge and improving clinical care for individuals with thalassemia.
The overall goal of the Thal-MAR is to improve the health and well-being for individuals with clinically significant thalassemia by increasing access to high quality, standardized thalassemia care within the mid-Atlantic region (MAR).
Thal-MAR is a joint initiative of the Children’s Hospital of Philadelphia and the Hospital of the University of Pennsylvania and supported through a grant from the Health Resources & Services Administration (HRSA).
If you are interested in joining Thal-MAR, please email email@example.com.