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Sickle Cell Anemia

What is Sickle Cell Anemia?

Sickle cell anemia is a blood disorder characterized by red blood cells that assume a rigid, sickle shape.

 

Sickle cell anemia is a blood disorder characterized by red blood cells that assume a rigid, sickle shape.
Acknowledgement of Sickle Cell Anemia has not been added yet.
11.0http://www.orpha.net
Synonyms for Sickle Cell Anemia has not been added yet.
Cause of Sickle Cell Anemia has not been added yet.
Symptoms for Sickle Cell Anemia has not been added yet.
Diagnosis of Sickle Cell Anemia has not been added yet.
Diagnostic tests of Sickle Cell Anemia has not been added yet
Treatments of Sickle Cell Anemia has not been added yet.
Prognosis of Sickle Cell Anemia has not been added yet.
Tips or Suggestions of Sickle Cell Anemia has not been added yet.
References of Sickle Cell Anemia has not been added yet.
Express yourself!:) Created by Jaquist
Last updated 30 Nov 2011, 04:24 PM

Posted by Jaquist
30 Nov 2011, 04:24 PM

Hey, new to the group:) I'm sure we can all relate here. Explain your situation, vent, inquire:). Let's get this group going! Be blessed.

Community External News Link
Title Date Link
These Patients Had Sickle-Cell Disease. Experimental Therapies Might Have Cured Them. 02/02/2019
Could gene therapy cure sickle cell anemia? 03/11/2019
Gene therapy targets sickle-cell disease 04/04/2019
In A 1st, Doctors In U.S. Use CRISPR Tool To Treat Patient With Genetic Disorder 07/30/2019
GBT Snags FDA Approval for First-of-its-Kind Sickle Cell Disease Treatment 11/27/2019
A Young Mississippi Woman's Journey Through A Pioneering Gene-Editing Experiment 12/28/2019
A Year In, 1st Patient To Get Gene Editing For Sickle Cell Disease Is Thriving 06/27/2020
Rivipansel Granted FDA’s Rare Pediatric Disease Designation for SCD 10/11/2020
Fulcrum Therapeutics Presents Updated Data On Sickle Cell Disease Program At The 62nd American Society Of Hematology (ASH) Annual Meeting And Exposition 12/06/2020
Chiesi Global Rare Diseases Announces FDA Approval of FERRIPROX® (deferiprone) for Treatment of Transfusional Iron Overload due to Sickle Cell Disease 05/02/2021
Gap in care, research and funding for rare blood disorder disproportionately affecting Black Americans 05/09/2021
Las Vegas woman writes children's book to help people with rare disease 05/21/2021
The Integration of Gene Therapy for Rare Disease 07/30/2022
FDA approves gene therapy for sickle cell disease: 'One incredible journey of success.' 12/12/2023
New way for states to cover pricey gene therapies will start with sickle cell disease 03/14/2024
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Cords registry

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

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Express yourself!:)

Created by Jaquist | Last updated 30 Nov 2011, 04:24 PM


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