March 5, 2021March 4, 2021
It’s Difficult to Manage Sickle Cell Pain at Home During a Pandemic

I have not felt well recently. I have been struggling with a lot of pain from sickle cell crises. In normal circumstances, I think I ... Read more
March 4, 2021March 4, 2021
VEST Lowers Duration of Painful SCD Crises

Vascular electrical stimulation therapy (VEST), a form of local electrical stimulation applied to the skin, can lower the duration of painful vaso-occlusive crises (VOCs) in ... Read more
March 3, 2021March 1, 2021
Why It’s Important for Everyone to Prioritize Their Health

It’s easier said than done. Everyone always says that health should be a person’s No. 1 priority, but it’s not until push comes to shove ... Read more
March 2, 2021March 2, 2021
Stem Cell Transplant, Gene Therapy in SCD Tied to Improved Quality of Life

The quality of life of people with sickle cell disease (SCD) and transfusion-dependent thalassemia (TDT) — two inherited blood disorders — tends to improve ... Read more
February 25, 2021February 28, 2021
Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

Diagnosed with sickle cell disease as a 6-month-old, Tristan Lee has faced a lot of challenges over his 37 years of life. But from ... 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

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

Subscribe to our mailing list

Alternatives to Opioids Seen to Ease Pain, Raise Serotonin Levels in Early Study

Oxbryta Can Ease or Fully Heal Leg Ulcers, Trial Analysis Shows

Pandemic Won’t Stop Rare Disease Day on Feb. 28

NHLBI Challenges Students to Create Innovative Tools to Raise Awareness

NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns

Here’s What I’ve Learned About Dating With Sickle Cell Disease

Abnormal Flow of Sickled Cells Damages Blood Vessel Walls

Even During Sickle Cell Crises, I Avoid the Hospital Due to the Pandemic

Lonza to Produce Aruvant’s ARU-1801 for Pivotal Trial

EMA Reviews Oxbryta: Therapy Would Be 1st in EU Targeting SCD Root Cause

COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say

Trial Will Test New Combination Regimen for Stem Cell Collection

Sickle Cell May Knock Me Down, but I Will Stand Back Up

FDA Clears Way for Trial of Gene Editing Therapy for Severe SCD

NORD’s Caregiver Respite Program Continues Through Pandemic

I Can Still Be Productive During a Sickle Cell Crisis

Clinical Trial Cleared for GPH101, First Potentially Curative SCD Therapy

BCH-BB694 Gene Therapy Safely Treating Severe SCD Patients in Pilot Trial

Oral IMR-687 Seen to Lessen VOCs, Pain Crises in Patients in Phase 2a Trial

NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum

2020 Was Challenging, but I’m Grateful for My Progress

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

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

Subscribe to our mailing list

Alternatives to Opioids Seen to Ease Pain, Raise Serotonin Levels in Early Study

Oxbryta Can Ease or Fully Heal Leg Ulcers, Trial Analysis Shows

It’s OK to Take a Break From Raising Awareness About Sickle Cell Disease

Pandemic Won’t Stop Rare Disease Day on Feb. 28

NHLBI Challenges Students to Create Innovative Tools to Raise Awareness

NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns

Here’s What I’ve Learned About Dating With Sickle Cell Disease

Abnormal Flow of Sickled Cells Damages Blood Vessel Walls

Even During Sickle Cell Crises, I Avoid the Hospital Due to the Pandemic

Lonza to Produce Aruvant’s ARU-1801 for Pivotal Trial

EMA Reviews Oxbryta: Therapy Would Be 1st in EU Targeting SCD Root Cause

COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say

Trial Will Test New Combination Regimen for Stem Cell Collection

Sickle Cell May Knock Me Down, but I Will Stand Back Up

FDA Clears Way for Trial of Gene Editing Therapy for Severe SCD

NORD’s Caregiver Respite Program Continues Through Pandemic

I Can Still Be Productive During a Sickle Cell Crisis

Clinical Trial Cleared for GPH101, First Potentially Curative SCD Therapy

BCH-BB694 Gene Therapy Safely Treating Severe SCD Patients in Pilot Trial

Oral IMR-687 Seen to Lessen VOCs, Pain Crises in Patients in Phase 2a Trial

NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum

2020 Was Challenging, but I’m Grateful for My Progress