Mission

Access to quality healthcare and a cure for all affected children and adults with sickle cell disease.

Our mission is to raise awareness and enhance sickle cell disease treatment by unlocking and sharing knowledge, facilitating collaboration, education and building a network of experts. Ultimately, these will improve care for children and adults with sickle cell disease and make quality healthcare accessible.

Access to quality healthcare and a cure for all affected children and adults with sickle cell disease.
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“There is a large discrepancy in diagnosis and prevention of sickle cell disease between countries in Europe and worldwide. This is shown by a lack of systematic newborn screening on the disease and absence of prevention policy. Even if diagnosed there is limited access to adequate care because of the lack of resources and trained physicians or health care professionals. On the other side there are tremendous initiatives to raise awareness and improve health care for people with sickle cell disease.

Therefore, as a start, we bring together news, information and knowledge we have available into one place with the aim to share it in an easy way with all those interested in it. Together we can accelerate the broader knowledge base in Europe!”

Pieter Sonneveld, former EHA President
Professor of Hematology, Erasmus University Medical Center, Rotterdam, The Netherlands.
About us

EHA is a non-governmental and not-for-profit membership organization that is guided by its mission to promote excellence in patient care, research and education in hematology. In pursuing this mission, EHA acts exclusively in the interest of hematology and its practitioners and is bound by core values of independence, integrity and transparency.

As a Common Good Organization, EHA’s profits generated from its congress are invested in other activities that serve the hematology community. The Board and Committee members contribute on a voluntary basis to the association’s work. EHA is an open networking organization. We cherish and
celebrate collaboration to share knowledge and experience and help hematology and hematologists to achieve excellence in every part of the world.
We pay attention to sustainability towards the environment and especially in relationships and collaboration.

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#1 - Research

“Research has made it possible that the average life span (in the West) has increased to 46 years. When it comes to curing people with sickle cell disease innovative gene therapy is mentioned as a potential method of cure in the future.”

Professor Martina Muckenthaler, EHA Task Force Hemoglobinopathies
Professor of Molecular Medicine| MMPU group leader | University Clinic Heidelberg | Germany
#2 - Society

“We need an official approach in Europe stating that every child with sickle cell disease should be identified within the first few weeks of life.”

Professor David Rees, EHA Task Force Hemoglobinopathies
Professor of Pediatric Hematology, | King’s College Hospital in London | UK
Sickle cell disease

Sickle cell disease is an inherited disease in which the red blood cells have an abnormal crescent shape, block small blood vessels, and have a shorter lifespan as normal red blood cells.

This can cause a range of serious health issues, including intense pain, stroke, organ damage and even premature death.

Sickle cell disease is caused by a mutation in one of the genes for hemoglobin, the substance inside red blood cells that binds to oxygen and carries it from the lungs to the tissues. It is most common in people of West and Central African descent.

Although people with sickle cell disease nowadays live longer, many are unable to access quality care. On top of that there is a lack of treatment options to effectively address their condition.

NEWS

Selected from the Sickle Cell Net news platform

Non-Invasive Prenatal Screening Test for Sickle Cell Appears Possible, Study Reports

A non-invasive prenatal test to diagnose a risk of sickle cell disease in a baby is possible and may be available in clinics in a near future, if further testing confirms its efficacy, researchers in the U.K. report.

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Uncovering Sickle Cell Disease - A new picture of an Old Disease

Everyday, people endure the painful and life-threatening symptoms of sickle cell disease in the shadows because of fear, stigma and isolation. Together with Novartis, Dr Alex Kumar, a global health physician and photographer, is sharing images and stories from around the globe that are intended to help inspire the sickle cell community and raise awareness of the disease to help change how the world sees it.

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EHA-SWG Scientific Meeting on Red Cell and Iron Metabolism Defects: From basic science to clinical case application

The program will examine all the possibilities regarding diagnosis and treatment of both inherited and acquired conditions of anemias. The meeting will start with an introductory lecture discussing the general molecular physiology of erythropoiesis and iron homeostasis and the rest of the meeting will focus on clinical cases based for the different conditions, with interactive discussion Target audience: Hematologists, pediatricians, biomedical scientists, biologists and general practitioners.

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Education

EHA is one of the largest international, independent providers of hematological knowledge. To harmonize hematology knowledge, EHA offers a comprehensive and integral curriculum which forms the basis of the Medical Education Program, through which professionals acquire state-of-the-art knowledge by use of various means.
To ensure high-quality resources and make sure material is original, up-to-date and relevant, all EHA learning tools are reviewed by designated hematology professionals.

For the field of sickle cell disease different e-courses, learning programs and preceptorships are in preparation. The learning tools created by hematology professionals will be available on the EHA Campus, the online learning platform for all hematology professionals.

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Research

EHA aims to foster science and spread knowledge in basic, translational and clinical research in hematology in Europe. The EHA Roadmap for European Hematology Research identifies priorities and needs across the different areas of hematology. A fundamental component of EHA initiatives for research in hematology are the 23 EHA Scientific Working Groups and their regular EHA-SWG Scientific Meetings.

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Advocacy

By engaging with EU institutions and other relevant stakeholders EHA strives to achieve more and better research funding opportunities, improve regulations, increase the availability and affordability of medicines, and harmonize education and training of hematologists across Europe.

Here you will find the relevant policy and advocacy initiatives of EHA on sickle cell disease.

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