May 6, 2021May 6, 2021
Spoken Word Poetry Contest Open to Sickle Cell Patients, Caregivers

A spoken word poetry contest is welcoming submissions from people with sickle cell disease (SCD) and their caregivers. The contest, “Lift Every Voice to ... Read more
May 5, 2021May 3, 2021
Should You Blog About Your Health Journey?

Recently, a fellow sickle cell warrior messaged me on Instagram to ask if I thought they should document their health journey by starting a blog. ... Read more
May 4, 2021May 4, 2021
FDA Expands Approvals of Ferriprox

The U.S. Food and Drug Administration (FDA) has expanded the label of Chiesi Global Rare Diseases’ iron-binding oral treatment Ferriprox (deferiprone) to include patients ages ... Read more
April 28, 2021April 29, 2021
FDA Clears Way for Phase 1 Trial of Low-dose Oral Carbon Monoxide

The U.S. Food and Drug Administration has cleared the way for a Phase 1 trial of HBI-002, Hillhurst Biopharmaceuticals‘ oral carbon monoxide treatment for ... Read more
April 28, 2021April 26, 2021
Finding Sickle Cell Awareness in Unexpected Places

I have a lot of pride when it comes to my general knowledge. I think I am a great person to have on your team ... Read more

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October 25, 2016October 25, 2016

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 outcomes ... Read more

Spoken Word Poetry Contest Open to Sickle Cell Patients, Caregivers

Should You Blog About Your Health Journey?

FDA Expands Approvals of Ferriprox

FDA Clears Way for Phase 1 Trial of Low-dose Oral Carbon Monoxide

Finding Sickle Cell Awareness in Unexpected Places

Mitochondrial DNA Carried in Blood May Trigger Inflammation in Sickle Cell

Quick Approval Given COVID Vaccines Raise Concerns, Rare Disease Patients Say

Cancer Diagnosis in Patient Given LentiGlobin Revised to Severe Anemia

I’m Having Trouble Accepting a Recent Avascular Necrosis Diagnosis

‘Real Impact’ Grants Help Nonprofits Help People With Blood Disorders

EveryLife Scholarship Fund Open Until May 7 for Adults With Rare Diseases in US

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Partners Seek to Educate About Pediatric Blood Transfusions

What Playing Football Made Me Realize About Myself

Oxbryta Increased Hemoglobin, Reduced Hemolysis in Adults and Adolescents

How to Cultivate a Successful Career While Living With Sickle Cell Disease

FT-4202 at Higher Dose Safe and Helpful to Patients in Phase 1 Trial

Getting Vaccinated Was a Major Mental Hurdle to Clear

GBT Granted Rights to SCD Small Molecule Programs in Deal With Sanofi

1st CRISPR Gene Editing Trial Slated to Open in Severe SCD Patients

Cost of Rare Diseases in US? Nearly $1 Trillion in 2019, EveryLife Foundation Finds

My Views About Exercise Changed as I Grew Older

Imara Opens Higher Dose Arms in Phase 2b Trials of IMR-687

Graphite Bio Raises $150M to Advance GPH101, Other Gene-editing Therapies

What I’ve Learned a Year After the Pandemic Started

Veto T-cells Boost Success of Stem Cell Transplant for SCD

What a Top-up Blood Transfusion Looks Like for Me

GBT Welcomes Proposals for ACCEL Grants, Aiding Sickle Cell Community

I’ve Come to Realize That We’re All in This Fight Together

Registration Open for 8th Annual ‘Walk With The Stars’ Event

Gene Therapy LentiGlobin Unlikely Cause of Blood Cancer in Early Trial, Bluebird Says

Pink, Green, Blue and Purple Lights Illuminated World for Rare Disease Day

Symposium Explores Social Burden Surrounding Access to Pain Meds

It’s Difficult to Manage Sickle Cell Pain at Home During a Pandemic

Kids with Sickle Cell Disease at Risk for Lead Poisoning, NYC Study Shows