Updates

May 22, 2020May 22, 2020
Video Games Connect Chronically Ill Children Isolated at Home, Hospital

Dara Riva always had a rule that her 10-year-old son could play video games only once a week. But then the COVID-19 pandemic struck, ... Read more
May 22, 2020May 21, 2020
What’s Inside My Medicine Cabinet?

Living with sickle cell disease, I rely on several medications and treatments for various situations. In general, I take medications for my own ... Read more
May 21, 2020May 21, 2020
Partnership to Ensure Supply of LentiGlobin, Potential Gene Therapy

Bluebird Bio extended a partnership with two divisions of Hitachi Chemical for the long-term development and manufacturing of LentiGlobin, its investigational gene therapy for sickle cell disease (SCD), and ... Read more
May 20, 2020May 18, 2020
How My Parents Set Me Up for Success in Sickle Cell Management

My parents knew they were carriers of the sickle cell trait before I was born, so they made an effort to find out if ... Read more
May 19, 2020May 19, 2020
Sickle Cell Disease Association, Hemanext Join to Support Programs

Hemanext, a medical technology company, is working with the Sickle Cell Disease Association of America (SCDAA) to help people with sickle cell disease through a mix ... 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 ... Read more

Updates

What’s Inside My Medicine Cabinet?

Partnership to Ensure Supply of LentiGlobin, Potential Gene Therapy

How My Parents Set Me Up for Success in Sickle Cell Management

Sickle Cell Disease Association, Hemanext Join to Support Programs

Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

Agios to Decide Next Steps for Mitapivat as SCD Treatment by Mid-year

Rare Diseases Clinical Research Network Opens Online Survey on COVID-19

Gene-editing Therapy CTX001 Granted RMAT Status by FDA for Severe SCD

Sickle Cell Association Issues COVID-19 Guidelines for US Reopening

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How I Prepared for the Intense ‘1,000 Reps Challenge’

Rice University Gets $2.45M NIH Grant to Improve CRISPR/Cas9 Treatment for SCD

NORD Webinar Outlines COVID-19 Response on Financial, Policy Fronts

APCER Report Confirms Safety of Sickle Cell Therapy Endari

Industry leaders seek to advance innovative resources for rare and orphan disease communities amid COVID-19 outbreak

Fera Requests FDA Orphan Drug Designation for Naproxcinod for SCD

Surge in Telemedicine One ‘Good’ Outcome from COVID-19 Crisis, Doctors Say

Case Researchers Awarded $3.7 Million to Test Emerging SCD Gene Therapies

NORD Opens COVID-19 Financial Aid Program for Rare Disease Community

Keeping Safe During a Lockdown

Sickle Cell, Darwinism, and COVID-19: Is My Life Worth Less Than Yours?

FDA Grants Orphan Drug Designation to FT-4202 for Sickle Cell Treatment

HealthWell Foundation Offering Help with Sickle Cell Treatment Costs

The Importance of Practicing Gratitude

Phase 2 Trial of Olinciguat, Oral Sickle Cell Therapy, Completely Enrolled

Sickle Cell Disease Association of America Extends COVID-19 Emergency Fundraiser

NORD’s Advice on COVID-19: You’re Stronger Than You Think

GBT Donating $250,000 to Nonprofits Aiding Sickle Cell Community

Phase 1/2 Trial of Gene-editing Therapy for SCD Cleared by FDA

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

Video Games Connect Chronically Ill Children Isolated at Home, Hospital

What’s Inside My Medicine Cabinet?

Partnership to Ensure Supply of LentiGlobin, Potential Gene Therapy

How My Parents Set Me Up for Success in Sickle Cell Management

Sickle Cell Disease Association, Hemanext Join to Support Programs

Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

Agios to Decide Next Steps for Mitapivat as SCD Treatment by Mid-year

Rare Diseases Clinical Research Network Opens Online Survey on COVID-19

What Does a Sickle Cell Crisis Feel Like?

Gene-editing Therapy CTX001 Granted RMAT Status by FDA for Severe SCD

Sickle Cell Association Issues COVID-19 Guidelines for US Reopening

Subscribe to our mailing list

How I Prepared for the Intense ‘1,000 Reps Challenge’

Rice University Gets $2.45M NIH Grant to Improve CRISPR/Cas9 Treatment for SCD

NORD Webinar Outlines COVID-19 Response on Financial, Policy Fronts

APCER Report Confirms Safety of Sickle Cell Therapy Endari

Industry leaders seek to advance innovative resources for rare and orphan disease communities amid COVID-19 outbreak

‘What’s Wrong with You Now?’

Fera Requests FDA Orphan Drug Designation for Naproxcinod for SCD

Surge in Telemedicine One ‘Good’ Outcome from COVID-19 Crisis, Doctors Say

Case Researchers Awarded $3.7 Million to Test Emerging SCD Gene Therapies

NORD Opens COVID-19 Financial Aid Program for Rare Disease Community

Keeping Safe During a Lockdown

Sickle Cell, Darwinism, and COVID-19: Is My Life Worth Less Than Yours?

FDA Grants Orphan Drug Designation to FT-4202 for Sickle Cell Treatment

HealthWell Foundation Offering Help with Sickle Cell Treatment Costs

The Importance of Practicing Gratitude

Phase 2 Trial of Olinciguat, Oral Sickle Cell Therapy, Completely Enrolled

Sickle Cell Disease Association of America Extends COVID-19 Emergency Fundraiser

Self-isolation Prompts a Range of Emotions Requiring Adjustments

NORD’s Advice on COVID-19: You’re Stronger Than You Think

GBT Donating $250,000 to Nonprofits Aiding Sickle Cell Community

During Lockdown, It’s OK to Rest, Too

Phase 1/2 Trial of Gene-editing Therapy for SCD Cleared by FDA