Sickle Cell 101Apr 28, 2025

Living with sickle cell disease in a nutshell

#SickleCell#SickleCell101

SCD Association of America, IncApr 26, 2025

With great sadness, SCDAA shares the news of the loss of Dr. Gwendolyn Poles-Corker on April 8, 2025. The 71-year-old was a trailblazing physician, educator, advocate and sickle cell warrior. She passed away from complications of her disease, but she never let it hold her back. She overcame the odds and brought healing and care to her patients and community. Dr. Poles-Corker supported SCDAA’s work and served as a member of the SCDAA Advisory Board until her passing. Her guidance and leadership will be deeply missed. Learn more: https://buff.ly/XXd6IzT

Global Alliance of Sickle Cell Disease OrganizationsApr 25, 2025

Let's talk about Priapism in Sickle Cell Disease!

Male with Sickle cell and their caregivers must be informed of the risk and empowered to seek help without hesitation.

Global Alliance of Sickle Cell Disease OrganizationsApr 16, 2025

5 Ways a Sickle Cell Warrior Can Live Their BEST Life

Dear Sickle Cell Warriors,

Always know You've got this! Living well with SCD is possible.

Believe in yourself and your strength.

You're a warrior, and warriors are resilient and courageous.

SCD Association of America, IncApr 18, 2025

Some snapshots from this past month! SCDAA President and CEO Regina Hartfield was proud to represent our organization during the Sickle Cell Foundation Inc. Conference. The theme was "Sickle Cell Disease: Call to Action, From Policy to Implementation." Thank you to SCF for hosting this important and enlightening event.

Sick CellsApr 16, 2025

The momentum from this year’s SCD Policy Forum is still going strong.

Thank you to everyone who showed up, spoke out, and made your voice heard. This was our largest turnout yet, with more meetings than ever before—a true testament to the strength and unity of the sickle cell community.

But our work doesn’t stop here. We hope you continue to feel empowered to stay engaged, raise your voice, and push for the change our community deserves.

Swipe through for a look at the highlights from the SCD Policy Forum and the impact you helped make possible.

Sickle Cell 101Apr 14, 2025

Stay hydrated, fam! 💧 For us with sickle cell, water’s not just a vibe—it’s a lifeline. Moms know best, right?

#sicklecell#sicklecell101

SCD Association of America, IncApr 09, 2025

URGENT ADVOCACY ALERT: We need your help to save the Centers for Disease Control and Prevention (CDC) Sickle Cell Disease Data Collection Program (SCDC). This program is crucial to improving nationwide care for sickle cell disease. We urge you to call or email your Representative and Senators to ask that they reverse the cuts and protect the existence of and funding for the Sickle Cell Data Collection Program. Read more here: https://buff.ly/uP0WZ4s

TWO EASY STEPS TO MAKE A DIFFERENCE

STEP ONE: Find contact information for your lawmakers’ offices!

-Find your Representative: https://buff.ly/pzHvDTq

-Find your Senators: https://buff.ly/txla4nE

-Call the Capitol switchboard at 202.224.3121 and ask them to connect you to your member’s office

STEP TWO: Say or email (please feel free to personalize)

I am [calling/emailing] as a member of the sickle cell disease community and as a constituent to ask that you protect the Sickle Cell Data Collection Program at the CDC. The recent HHS restructuring eliminated essentially all of the staff at the CDC’s Division of Blood Disorders, where the Sickle Cell Data Collection Program, the only surveillance system dedicated to sickle cell disease, is housed. This program helps collect important data on sickle cell disease which in turn:

-Helps lead to new and more effective treatments.

-Guides the development of interventions and policies that aim to improve care for sickle cell Warriors and lower costs for the healthcare system as a whole.

-Prompts where and when new clinics are built in order to best serve the community.

I am relying on you, as my [Senator/Representative] in Congress, to take action to ensure that the staff for this program are reinstated and to work to protect the funding for this critical program. Thank you for your time and attention to this matter.

Global Alliance of Sickle Cell Disease OrganizationsApr 09, 2025

Acute Chest Syndrome (ACS) is a serious and life-threatening complication of Sickle Cell Disease (SCD).

Read to understand more about Acute Chest Syndrome.

Like and share your thoughts!

Global Alliance of Sickle Cell Disease OrganizationsApr 06, 2025

The Sickle Cell Community Mourns the Passing of Professor Graham Roger Serjeant

(1940 - 2025)

The Global Alliance of Sickle Cell Disease Organizations (GASCDO) is deeply saddened by the passing of Professor Graham Roger Serjeant, a renowned champion for Sickle Cell Disease (SCD) awareness, research, and advocacy.

A Legacy of Dedication and Expertise

Professor Serjeant's tireless efforts and groundbreaking work have had a profound impact on the SCD community worldwide. His research and advocacy efforts took him to many countries, including Jamaica, Brazil, Greece, Nigeria, Uganda, Canada, and beyond.

A Lasting Impact

- Sickle Cell Trust (Jamaica): Founded by Professor Serjeant in 1986, this organization has provided essential healthcare services, educational programs, and screening initiatives to countless individuals.

- Advancing Patient Care: His work has led to significant improvements in patient care, inspiring a new generation of healthcare professionals and advocates.

We remember Professor Serjeant's dedication, expertise, and compassion. His passing leaves a void in our community, but his legacy will continue to guide us. We honor his memory by continuing to advocate for better care, treatment, and support for all living with SCD.

Rest in Peace, Professor Serjeant

Your work will never be forgotten. You will be deeply missed, but your legacy will live on in the countless lives you touched. The Sickle Cell Community will forever be grateful for your contributions to our community.

Sickle Cell 101Apr 07, 2025

Traveling with #sicklecell disease? Here's my must-have flight essentials. What do you fly with? Drop your go-to items below!

#sicklecell101

SCD Association of America, IncApr 01, 2025

April is National Minority Health Month. Sickle cell disease affects approximately 100,000 Americans, most of whom belong to a racial or ethnic minority community. SCDAA is dedicated to raising awareness about the unique issues faced by our minority populations, including barriers to care and resource gaps. Learn more: https://buff.ly/F0kRNor#NationalMinorityHealthMonth

SCD Association of America, IncApr 01, 2025

April is National Minority Health Month. Sickle cell disease affects approximately 100,000 Americans, most of whom belong to a racial or ethnic minority community. SCDAA is dedicated to raising awareness about the unique issues faced by our minority populations, including barriers to care and resource gaps. Learn more: https://buff.ly/F0kRNor#NationalMinorityHealthMonth

Global Alliance of Sickle Cell Disease OrganizationsMar 26, 2025

Managing Enuresis(Bed wetting) in Sickle Cell Disease(SCD)

Enuresis (bedwetting) affects millions of people worldwide.

Let's break the silence and stigma surrounding this common condition.

Read our latest post to learn more, find support, and discover ways to manage enuresis.

Sickle Cell Disease FoundationMar 27, 2025

Bone marrow transplant in teen years may lower stroke risk in SCD.

Undergoing a bone marrow transplant during adolescence may reduce the risk of stroke in people with sickle cell disease (SCD), while waiting until adulthood is unlikely to mitigate this risk, a mouse study suggests.

Read more here:

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El trasplante de médula ósea en la adolescencia puede reducir el riesgo de accidente cerebrovascular en la SCD.

Someterse a un trasplante de médula ósea durante la adolescencia puede reducir el riesgo de accidente cerebrovascular en personas con enfermedad de células falciformes (SCD), mientras se espera hasta que sea poco probable que la edad adulta mitigue este riesgo, sugiere un estudio de ratones.

Lea más aquí:

#NeglectedNoMore

#SickleCellDiseaseAwareness

#SickleCellStrong💪🏾

#SaveSickleCellLives❤️

#SickleCellWarriors

Global Alliance of Sickle Cell Disease OrganizationsMar 24, 2025

From its discovery over a century ago to the cutting-edge treatments of today, Sickle Cell Disease has come a long way.

Join us as we explore the fascinating history and promising future of SCD management!

SCD Association of America, IncMar 21, 2025

Hematologists/oncologists, pediatricians, primary care physicians and other health care providers are encouraged to participate in "A Rare Day in Community Hematology Clinic," a new Medscape activity designed to help providers learn how to better recognize specific characteristics of classic hematological disorders and optimally and equitably care for these patients. Learn more: https://buff.ly/KZncx9b

Sickle Cell Disease FoundationMar 19, 2025

Approved treatments for Sickle Cell Disease.

Sickle cell disease (SCD) may be cured in some individuals by a stem cell transplant. There also are several approved therapies to help manage the condition and its related complications. Some of the approved therapies used to treat to treat the disease are summarized below.

*Please note these therapies are not cures but have the ability to cure SCD*

Read more here:

https://sicklecellanemianews.com/approved-treatments-for-sickle-cell-disease/

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Tratamientos aprobados para la enfermedad de células falciformes.

La enfermedad de células falciformes (SCD) puede curarse en algunos individuos mediante un trasplante de células madre. También hay varias terapias aprobadas para ayudar a controlar la condición y sus complicaciones relacionadas. Algunas de las terapias aprobadas utilizadas para tratar la enfermedad se resumen a continuación.

*Tenga en cuenta que estas terapias no son curas, pero tienen la capacidad de curar el SCD*

Lea más aquí:

https://sicklecellanemianews.com/approved-treatments-for-sickle-cell-disease/

#NeglectedNoMore

#SickleCellDiseaseAwareness

#SickleCellStrong💪🏾

#SaveSickleCellLives❤️

#SickleCellWarriors

Global Alliance of Sickle Cell Disease OrganizationsMar 15, 2025

ADDRESSING CONCERNS ABOUT TREATMENT PERMISSIBILITY DURING RAMADAN

In response to your questions, we are sharing more tips and advice on managing Sickle Cell Disease during Ramadan.

SCD Association of America, IncMar 13, 2025

Stigma in emergency care can have serious consequences for people living with sickle cell disease. Check out this infographic from the American College of Emergency Physicians (ACEP) for best practices for pain management and the importance of compassionate, evidence-based care. Click to view infographic: https://buff.ly/ypy4iCw

Sick CellsMar 12, 2025

It’s been a great day of Hill meetings! A huge thank you to all the advocates who showed up, shared their voices, and made an impact. Your dedication is truly inspiring!

Please keep tagging us and sharing your photos—we love seeing all the advocacy in action! 📸❤️

SCD Association of America, IncMar 10, 2025

March is Blood Clot Awareness Month. People with sickle cell disease are at a higher risk of developing serious blood than the general population. Clots can form in the legs, lungs and even the brain, leading to life-threatening complications like stroke or pulmonary embolism. The good news is that early detection and prevention can make a world of difference. If you or a loved one has sickle cell disease, take a moment to learn about the warning signs and proactive steps you can take to stay safe. Learn more: https://buff.ly/8xukuPO

Global Alliance of Sickle Cell Disease OrganizationsMar 10, 2025

ALTERNATIVE OPTIONS FOR SICKLE CELL PAIN MANAGEMENT:

1. Acupuncture

2. Massage Therapy

3. Heat Therapy

4. Hydrotherapy

5. Mind-Body Therapies

6. Aromatherapy

7. Chiropractic Care

8. Nutritional Therapy

9. Mindfulness-Based Stress Reduction (MBSR)

Remember to consult with a healthcare professional before trying any new pain management techniques.

#SickleCellAwareness#GASCDO#EquityInCare#Advocacy#Strength#SickleCellWarriors#awareness#pain

Sick CellsMar 12, 2025

It’s been a great day of Hill meetings! A huge thank you to all the advocates who showed up, shared their voices, and made an impact. Your dedication is truly inspiring!

Please keep tagging us and sharing your photos—we love seeing all the advocacy in action! 📸❤️

Global Alliance of Sickle Cell Disease OrganizationsFeb 27, 2025

As Muslims all over the world begin their fasting, here is Fasting with Care: Hydration Strategies for Sickle Cell Warriors During Ramadan

SCD Association of America, IncFeb 28, 2025

🎉 Rare Disease Day is Here! Let’s Make a Difference Together! 🎉

Today, on the final day of Rare Disease Month, we stand in support of the 100,000 Americans living with sickle cell disease and the global rare disease community. Our goal is to raise $20,000 by the end of the day to fund sickle cell advocacy, education and outreach programs. And the first $10,000 in donations will be matched! Donate now: https://buff.ly/42LDulA

#RareDiseaseDay#SickleCellAwareness#SickleCellisRare

Sick CellsMar 04, 2025

Happy March, Ambassadors! Join us for today’s Tea Chat at 12 PM EST for meaningful conversations and updates.

Not an Ambassador yet? Now is a great time to get involved.

Learn more here: https://bit.ly/3jL6CzA

Global Alliance of Sickle Cell Disease OrganizationsFeb 24, 2025

Empowered Living with Sickle Cell Disease: Essential Tips

Living with Sickle Cell Disease requires proactive self-care and awareness. Here are key tips to prioritize your health:

1. Know Your Body

2. Stay Hydrated

3. Medication Management

4. Regular Check-Ups

5. Pain Management

6. Mental Health Matters

7. Advocate for Yourself

8. Stay Connected

9. Plan Ahead

By following these tips, you'll be empowered to manage your Sickle Cell Disease effectively, reduce uncertainty, and improve your quality of life.

SCD Association of America, IncFeb 20, 2025

SCDAA was thrilled this week to welcome representatives from our member organizations to our offices in Hanover, Maryland, for our Second Annual Open House! During our time together, we worked on brainstorming and planning for the year ahead. Our member organizations are our boots on the ground in communities across the country, and we would be unable to fulfill our mission without their participation. Thank you to everyone who traveled to join us!

Maryland Sickle Cell Disease Association Sickle Cell Disease Association of Illinois Sickle Cell Foundation of Minnesota The Sickle Cell Association of New Jersey

Sickle Cell Alliance FoundationFeb 21, 2025

Please join us as we partner with AAEW (African American Engagement Workgroup) and Hoxworth Blood Center to bring you the first Annual Live Well Cincinnati Health & Healing Expo!

This day will be filled with information on how to improve your health and how you can help the healing of some of our most vulnerable in our community.

If you are interested in being a vendor for this event please reach out to us. See you soon!

Charleston Center Offers Gene Therapy for SCD

MUSC's new center provides gene therapy and other advanced treatments for sickle cell disease patients in South Carolina, making care more accessible.

Reni-cel Shows Positive Results in SCD Trials

Patients with sickle cell disease experienced fewer painful episodes and improved blood health after receiving reni-cel, a gene-edited treatment.

High-cost Sickle Cell Gene Therapies Challenge Insurers

Expensive gene therapies for Sickle Cell Disease are prompting insurers and Medicaid to explore new payment models to make these life-changing treatments more accessible.

Global Alliance of Sickle Cell Disease OrganizationsFeb 14, 2025

Living with a chronic illness can be challenging, but nurturing a loving relationship doesn't have to be.

This Valentine's Day, focus on Love, Care and Support.

Happy Valentine's Day!❤️

SCD Association of America, IncFeb 18, 2025

Congratulations! TaLana Hughes, SCDAA board member and executive director of the Sickle Cell Disease Association of Illinois, has been named one of the 2025 Chicago Defender Women of Excellence Honorees! Kudos to TaLana for the incredible work she does in her community and on behalf of sickle cell warriors everywhere.

Sick CellsFeb 12, 2025

The countdown is on—just one month until Hill Day at the SCD Policy Forum! Time to prepare and make your voices heard.

Register Here: https://bit.ly/40xh3xG

First patient enrolled in fostamatinib trial for SCD

Researchers are testing fostamatinib to see if it can reduce complications in people with sickle cell disease by improving blood cell stability and reducing inflammation.

Casgevy Gene Editing Therapy Available at CHLA

Children's Hospital Los Angeles is now providing Casgevy, a gene editing therapy that helps increase fetal hemoglobin production to counteract sickling in red blood cells, offering a new treatment option for SCD patients.

Global Alliance of Sickle Cell Disease OrganizationsFeb 08, 2025

Meet Victoria Gray, the first warrior to receive CRISPR treatment for sickle cell disease! After 34 years of fighting the disease, Victoria shares her remarkable journey of hope and resilience. Watch as she tells her story of transformation, from struggling with debilitating pain attacks to living a life free from transfusions and major side effects.

Video is 10:41seconds

SCD Association of America, IncFeb 05, 2025

Juliana Ejedoghaobi was born with sickle cell anemia and faced intense pain crises. Watch her powerful story on how a clinical trial changed her life.

Sickle Cell Disease FoundationFeb 05, 2025

We acknowledge that many in our SCDF family have been impacted by the devastating LA fires.

If you are interested in helping those affected, we’ve compiled a list of GoFundMe Campaigns for your fellows in need. Every contribution helps!

Find GoFundMe link's through our the LinkTree in our bio.

NHS Approves £1.65 Million Sickle Cell Treatment

Approximately 1,700 people with severe sickle cell conditions may benefit from this expensive new treatment, which edits faulty genes in stem cells to potentially cure the condition.

NICE Approves Gene Therapy for Severe SCD

Funding for a one-time gene therapy will provide an alternative to stem cell transplants for some SCD patients, addressing healthcare inequalities by offering treatment when no donor match is available.

Global Alliance of Sickle Cell Disease OrganizationsFeb 03, 2025

People with Sickle Cell Disease (SCD) often face misconceptions about their condition.

Here are 12 things they want you to know:

1. Sickle Cell is Not Contagious

2. The Pain is Real and Severe

3. Fatigue is a Daily Struggle

4. We Are Not Drug Seekers

5. Cold and Dehydration Can Trigger a Crisis

6. There’s No Universal Cure

7. We Need More Awareness and Research

8. Mental Health Matters Too

9. We Can Live Full Lives with the Right Support

10. Routine Medical Care is Essential

11. Blood Donations Save Lives

12. Empathy Goes a Long Way

Sickle Cell Disease FoundationFeb 03, 2025

A new study shows that individuals living with sickle cell disease exhibit brain aging 14 years earlier than their actual age, even without stroke history, and socioeconomic factors also contribute.

Read more here.

https://tinyurl.com/3uhfjw7d

UCSF Launches CRISPR Trial for Sickle Cell

Researchers are using CRISPR to correct the genetic mutation causing SCD by editing patients' own blood stem cells, potentially eliminating the need for a donor transplant. This approach could provide a safer alternative to current treatments.

Biden-Harris Administration Expands SCD Treatment Access

The Biden-Harris Administration is increasing access to new treatments for sickle cell disease by partnering with drug manufacturers to make gene therapies more affordable and available to those on Medicaid. This model aims to improve health outcomes and reduce costs.

Stem Cell Transplants Feasible for Young SCD Patients

Stem cell transplants can cure sickle cell disease by replacing faulty stem cells with healthy ones, offering improved health outcomes for those who undergo the procedure successfully.

Sickle Cell Disease Advisory Committee Meeting

Experts discuss SCD research priorities, focusing on gene therapies and organ health impacts.

UCSF Launches CRISPR Trial for Sickle Cell

Researchers are using CRISPR to correct the genetic mutation causing SCD by editing patients' own blood stem cells, potentially eliminating the need for a donor transplant. This approach could provide a safer alternative to current treatments.

Biden-Harris Administration Expands SCD Treatment Access

The Biden-Harris Administration is increasing access to new treatments for sickle cell disease by partnering with drug manufacturers to make gene therapies more affordable and available to those on Medicaid. This model aims to improve health outcomes and reduce costs.

Stem Cell Transplants Feasible for Young SCD Patients

Stem cell transplants can cure sickle cell disease by replacing faulty stem cells with healthy ones, offering improved health outcomes for those who undergo the procedure successfully.

Sickle Cell Disease Advisory Committee Meeting

Experts discuss SCD research priorities, focusing on gene therapies and organ health impacts.