April 16, 2021April 15, 2021
EveryLife Scholarship Fund Open Until May 7 for Adults With Rare Diseases in US

The EveryLife Foundation for Rare Diseases is accepting applications for a scholarship program that aims to help adults with a rare disease pursue personal goals through ... Read more
April 15, 2021April 15, 2021
Partners Seek to Educate About Pediatric Blood Transfusions

To inform sickle cell disease (SCD) patients and their caregivers about blood transfusions, which are commonly used to treat the disorder, the Sickle Cell Disease ... Read more
April 14, 2021April 12, 2021
What Playing Football Made Me Realize About Myself

For the first time in my life, I played a game of football, or soccer as it’s called in the U.S., with my friends. Was ... Read more
April 13, 2021April 13, 2021
Oxbryta Increased Hemoglobin, Reduced Hemolysis in Adults and Adolescents

Treatment with oral Oxbryta (voxelotor) leads to rapid and sustained rises in hemoglobin levels, reduces red blood cell destruction (hemolysis), and improves overall health in adolescents ... Read more
April 9, 2021April 7, 2021
How to Cultivate a Successful Career While Living With Sickle Cell Disease

I want to start by stressing that I do not believe a booming career is the only parameter of success. I have previously written about ... 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

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

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

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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

VEST Lowers Duration of Painful SCD Crises

Why It’s Important for Everyone to Prioritize Their Health

Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

Gates Foundation, Novartis Working on Affordable Gene Therapy for Sickle Cell

Here’s How You Can Be a Better Partner for a Sickle Cell Patient

Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients

Bluebird Bio Pauses Trials of Potential Gene Therapy LentiGlobin

Our Wellness Depends on Our Ability to Practice Self-love

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

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

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

Subscribe to our mailing list

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

VEST Lowers Duration of Painful SCD Crises

Why It’s Important for Everyone to Prioritize Their Health

Stem Cell Transplant, Gene Therapy in SCD Tied to Improved Quality of Life

Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

Gates Foundation, Novartis Working on Affordable Gene Therapy for Sickle Cell

Here’s How You Can Be a Better Partner for a Sickle Cell Patient

Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients

Bluebird Bio Pauses Trials of Potential Gene Therapy LentiGlobin

Our Wellness Depends on Our Ability to Practice Self-love