Self-isolation Prompts a Range of Emotions Requiring Adjustments
I have been self-isolating since March 19, and already I have been through a series of emotions during this lockdown period. Initially, most of ... Read more
Updates
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GBT Donating $250,000 to Nonprofits Aiding Sickle Cell Community
Global Blood Therapeutics (GBT) is giving $250,000 to support the U.S. sickle cell disease (SCD) community during the COVID-19 pandemic. Its newly created GBT ... Read more -
During Lockdown, It’s OK to Rest, Too
I was hospitalized on March 3 with a sickle cell crisis and discharged 12 days later. I then spent a week recovering at home. ... Read more -
Phase 1/2 Trial of Gene-editing Therapy for SCD Cleared by FDA
The U.S. Food and Drug Administration (FDA) has cleared the start of a Phase 1/2 clinical trial testing a genome editing-based therapy, known as ... Read more -
NORD’s Advice on COVID-19: You’re Stronger Than You Think
First, the bad news: If you’re one of the 30 million or so Americans with a rare disease, you probably have lower immunity to ... Read more
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NORD Partners with ‘Sing Me a Story’ for July 18–20 Living Rare Forum
The Living Rare, Living Stronger Patient and Family Forum, originally set for May 14–16 ... -
We Need Credible Information During the Pandemic, Not Dangerous Myths
As a sickle cell advocate, many people have come to me for advice, especially ... -
The Isolation Diaries
On March 16, 2020, United Kingdom Prime Minister Boris Johnson announced that in response ... -
Inflammation Markers Identify Sickle Cell Patients at Risk for Worse Outcomes, Study Suggests
High blood levels of two pro-inflammatory molecules, called interleukin-6 (IL-6) and interleukin-8 (IL-8), are ... -
Availability of Endari Not Affected by COVID-19 Pandemic, Emmaus Says
The supply of the sickle cell disease (SCD) medication Endari (L-glutamine) will not be ... -
Global Rare Disease Group’s Focus: 1,000 New Therapies by 2027, Despite COVID-19
Even with the coronavirus pandemic ravaging Europe and much of the world, patient advocate ...
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Kids with Sickle Cell Disease at Risk for Lead Poisoning, NYC Study Shows
News
National and local policies have led to large reductions in lead poisoning cases overall in the U.S., but severe cases are still common among children. Recently, researchers at the New York City Department of Health and Mental Hygiene (DOHMH) investigated sources of exposure, risk factors, and ... Read more