Sickle cell-hemoglobin E disease syndrome
Synonyms: HbSE disease
A rare genetic hemoglobinopathy usually characterized by mild microcytic hemolysis and very rarely vaso-occlusive complications. Severe manifestations have been reported including hematuria splenic infarction acute chest syndrome acute episodes of pain and reversible bone marrow necrosis. The genotype is characterized by an HbS allele in combination with an HbE variant (beta26glu>lys); symptoms are due to the low allelic expression of HbE leading to HbS predominance (65+/-5%).
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Sickle cell-hemoglobin E disease syndrome?
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Advocacy Organizations
Organisation for Sickle Cell Anaemia Research (OSCAR) Sandwell Co Ltd
Working together with service users (clients), voluntary and statutory services and stakeholders to support and improve the quality of life for people affected by Sickle Cell and Thalassaemia.
SICKLE CELL AWARENESS FOUNDATION CORP INT
To expand the genetic condition of sickle cell disease. To advocate for improved treatment services and accessibility to these services. To inform what parents, family members and the community can do to impact this disease condition. We seek to inspire progress for a much-needed cure for this disease.
Supporters of Families with Sickle Cell Disease, Inc
Our mission is to increase self-efficacy and improve the overall quality of life for individuals living with sickle cell and thalassemia, children, adults and their families within Oklahoma through systemic changes in patient care, disability policies, education, family support, economic self-sufficiency, awareness and advocacy.
Uriel E. Owens Sickle Cell Disease Association of the Midwest
The mission of the Uriel E. Owens Sickle Cell Disease Association of the Midwest is to provide information and awareness about Sickle Cell Disease, to advocate for the needs of persons with Sickle Cell, and support research to find a cure. Besides education and awareness, the Association provides emergency financial assistance, referral services, state and national advocacy, and educational scholarships for sickle cell patients.
Sickle Cell Reproductive Health Education Directive
We advocate for high quality sexual and reproductive healthcare for individuals living with Sickle Cell Disease.
Hope Life Support & Empowerment Initiative
We are committed to building a society that is fully aware of their health status and to improve the health of people in communities where less disadvantaged children, youths, women and men lived
As One Foundation
To empower families globally, delivering life-saving sickle cell education.
William E. Proudford Sickle Cell Fund Inc.
To support sickle cell awareness, education, state-of-the-art treatment and research, and to bring hope to families affected by this devastating disease.
Project SPIRIT Sickle Cell (PSSC), Inc.
Project SPIRIT Sickle Cell provides spiritual counseling for individuals to explore their personal beliefs and navigate medical and life transitions as well as the challenges of living with sickle cell disease.
Sickle Cell Association of Texas Marc Thomas Foundation
To enhance and improve the quality of life for individuals and families affected by sickle cell disease and sickle cell trait through case management, programming and supportive services.
DREAMSICKLE KIDS FOUNDATION,INC
First nonprofit on NV created for Sickle Cell Awareness. Aimed at increasing awareness and education in NV
TANZANIA SICKLECELL WARRIORS ORGANIZATION (TASIWA)
TANZANIA SICKLECELL WARRIORS ORGANISATION abbreviated as TASIWA, is Tanzanian non governmental and non profit organization which aims at improving the survival rates of sickle cell-born children by promoting better handling and management of sickle cell disease through various programs including education and advocacy which mostly done at the community level.
OPFORD Foundation
OPFORD.org (Open Platform for Rare Diseases) was conceived as a digital and online resource centre for orphan diseases with a primary focus of serving patients and caregivers by connecting them to curated resources regarding symptoms, causes, diagnosis and treatment. We have expanded our services to health counselling and guidance for patients and caregivers to prevent possible complications.
HECI Medicine Incorporation
The objectives of HECI Medicine is to provide dependable access to affordable medicine and diagnostic tools to patients in Africa affected by rare diseases, collaborative with the scientific community to accelerate drug development for rare diseases therapies that are specific to populations in Africa, and collaborate with other rare disease organizations to ensure equitable access to health.
FELIS HEALTHCARE FOUNDATION INC
The mission is to provide free health care services, education, and training to the most vulnerable, poorest, and underserved.The vision is ever-increasing access to medical treatment, better education, and nutrition, especially for those unable to pay for the necessary products and services.This approach helps us transform the lives of millions of people and address data gaps on different issues,
Hemostasis and Thrombosis Center of Nevada
The Hemostasis & Thrombosis Center of Nevada (HTCNV) is Nevada's only federally designated hemophilia treatment center (HTC). We provide care for benign inherited blood disorders specifically bleeding disorders, thrombotic disorders and sickle cell disease. Our mission is to provide access to compassion evidence based quality care to all patients in Nevada regardless of their ability to pay.
Care-for-Rare America Inc
To establish a global alliance in order to identify the genetic causes of rare diseases and develop effective treatments, following a three-stage approach: recognize, understand, cure.
Help Hope Live
Help Hope Live supports community-based fundraising for people with unmet medical expenses and related costs due to organ transplants or catastrophic injuries or illnesses. For 38 years, Help Hope Live has been showing clients and families how to bring together a network of relatives, friends, and neighbors in fundraising efforts to help cover the cost of uncovered medical expenses. These efforts play a critical role in helping our clients recover and maintain their health and independence. Since 1983, we have helped thousands of people raise millions of dollars for Help Hope Live to pay a wide range of expenses, including out-of-pocket costs for: medications, durable medical equipment, home health care, wheelchair-accessibility modifications, physical therapy, innovative treatments, medical travel and temporary relocation, even emergency living assistance. Our program has also helped thousands pay it forward and assist others with their medical expenses. Annually, we help place medical care within reach of about 5,000 families across the nation.
Clinical Trials
For a list of clinical trials in this disease area, please click here.