CBO Organization: The National Telehealth Policy Resource Center
Presenter: Christine Calouro, Policy Associate
Topic: Telehealth Resource Center
Read MoreCBO Organization: The National Telehealth Policy Resource Center
Presenter: Christine Calouro, Policy Associate
Topic: Telehealth Resource Center
Read MoreFebruary 16 2021 – We are aware of the announcement today from bluebird bio regarding the temporary suspension of the clinical trials of its LentiGlobin Gene Therapy for Sickle Cell Disease (bb1111). We have investigated the situation, and we have met with bluebird bio to discuss the information available to the public. MARAC is monitoring developments and we will continue to communicate our findings to the community of people living with sickle cell disease (SCD).
SCDAA honors the SCD warriors who volunteer in clinical research. They have given their time so that others may benefit from new future treatments and cures.
We pay tribute to all of those whom we have lost to SCD, as we know many have died too young. We understand that clinical research is the path for progress to improved survival in SCD.
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Make a world of difference in a sickle cell warrior’s life and join SCDAA in our campaign to promote diverse blood donations on World Sickle Cell Day, June 19!
Mark your calendar and schedule and appointment today by clicking here
Read MoreAnnual Advocacy Day Part I
When: Apr 20, 2021 04:00 PM – 5:30PM Eastern Time Eastern Time (US and Canada)
Register in advance for this meeting:
https://zoom.us/meeting/register/tJUudu-rrjIvGNJLTeCcEpPeFfSEGXZfAzhp
Annual Advocacy Day Part II
When: Apr 21, 2021 04:00 PM – 5:30PM Eastern Time (US and Canada)
Register in advance for this meeting:
https://zoom.us/meeting/register/tJYkd-morjkiE91JTSxhtccabJt29ZYLMlll
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Please join us for a TOWN HALL meeting, featuring our own Dr. James Taylor, Director of the Center for Sickle Cell Disease:
COVID-19 VACCINE and SICKLE CELL DISEASE: IS IT SAFE FOR ME?
Thursday, February 18, 6:30 PM
Get your questions about the vaccine answered. Register now and let us know if you have a question!
REGISTRATION: https://howard.zoom.us/meeting/register/tZIode2qrDMoHNB7gBl3FxKmCqPpUVtrFkwC
LEAVE A QUESTION: https://docs.google.com/forms/d/e/1FAIpQLSfOz26UrOaSNB5GdehuXxk4zjVJ81bqmfVJ2zikeOlQunPstA/viewform
Read MoreDecember 14, 2020 – News is evolving rapidly about COVID-19 and COVID-19 vaccines. Early results from the COVID-19 vaccine trials are very promising, although the true benefits and risks will not be known until a larger number of people receive the vaccine.
The Centers for Disease Control and Prevention (CDC) lists sickle cell disease (SCD) as one of the populations vulnerable to severe COVID-19. Sickle cell disease raises the risk for serious problems with COVID-19, especially when compared to the same age in the general population.
What about side effects?
Side effects from the vaccine are possible. Reported side effects include redness and soreness at the injection (shot) site, headache, fever and body aches. These side effect symptoms go away after a few days. The second injection may have more of these side effects than the first injection, but they also went away after a few days. Two severe allergic reactions were reported and seemed to occur only in people with a history of severe life-threatening allergies.
Based on current information, MARAC recommends that people with sickle cell disease receive COVID-19 vaccination.
Frequently Asked Questions based on CDC information as of 12-13-2020
Is a booster dose of vaccine necessary? Can I get two doses of two different kinds of vaccine?
We don’t really know. The testing was done with two doses of each vaccine so that is the recommended plan. Getting just one dose or a mixture of two vaccines might be a waste of the shot and leave you with incomplete protection. The v-safe smartphone app will remind you when it is time to get the second dose.
If I had COVID-19 disease should I still get a vaccination against COVID-19?
Probably yes, but wait until your isolation period is over. Talk to your doctor.
If I just had COVID-19 exposure, should I still get a vaccination against COVID-19?
Probably yes, but after a quarantine period. Talk to your doctor. If you live in a group setting, it might be worthwhile to protect others by getting the vaccine without waiting for quarantine to end.
How is the safety of these vaccines being tracked?
v-safe is a smartphone-based tool that uses text messaging and web surveys to provide personalized health check-ins after you receive a COVID-19 vaccination. This will allow you to quickly share any vaccine side effects with the CDC.
I have some allergies. What allergy history is worrisome?