Other Educational Resources

Nutrition for Patients with Thalassemia & Pyruvate Kinase Deficiency: A Guideline for Clinicians

A critical review of what is known about nutrition in congenital anaemias, particularly the beta thalassaemias and pyruvate kinase deficiency to be used as a reference guide, mainly for the haematologist who is not experienced in the issues of diet yet has to answer questions often without the benefit of a dietitian. On the other hand such a review may also be of assistance to dietitians who must answer questions concerning diet in hereditary complex conditions which may be rare and seldom met in their daily practice. Consult it here.

SPARCo Standards of care for Sickle Cell Disease in Sub-Saharan Africa

Learn all about SPARCO reccomendations for the management of Sickle Cell Disease in Sub-Saharan Africa. Discover more here.

The Cribsiders - Sickle Cell Disease in Adolescence: Growing Pains

Learn all about Sickle Cell Disease and the pediatric to adult transition in care from Dr. Lydia Pecker, a sickle cell doctor for young adults practicing in Baltimore, Maryland. In this episode the following topics are covered: diagnosing sickle cell, detecting and managing complications, and the major treatments, including new drugs and bone marrow transplants. Discover it here.

Cheat Codes: a Sickle Cell Podcast

Cheat Codes: A Sickle Cell Podcast, is led by expert hosts Dr. Ahmar Zaidi and Dr. Mike Callaghan. Cheat Codes also features interviews with leading experts, moments from major conferences, and contributions from people living with sickle cell. ARISE Project Scientific Coordinator Baba Inusa contributed to episode 2 called Hydroxyurea, Hemoglobin, and Dr. Baba Inusa from ASCAT 2019 

Sickle Cell Disease: a battle for equality, justice and respect

What led a 46 year old Haitian artist to being kicked out of the hospital in the dead of winter? What led him to joblessness and homelessness? Part of the answer was in his blood…but most of the answer is us. Watch the talk held at at TEDxDetroit here.

How this disease changes the shape of your cells - Amber Yates

What shape are your cells? You might not spend a lot of time thinking about the bodies of these building blocks, but microscopically, small variations can have huge consequences. And while some adaptations change these shapes for the better, others can spark debilitating complications. Amber M. Yates dives into the science of the malignant sickle-cell mutation. Discover it here.

UK Forum on Haemoglobin Disorders

Here you can consult and download the useful material made available by the UK Forum on Haemoglobin Disorder.

LSHTM short courses

Short courses provide opportunities to study specialised topics in a broad range of health and global health fields. LSHTM, one of the ARISE consortium partners, provides with useful and interesting short courses. More detailed information on the topics addressed by each course and the registration procedure here.

Vision of Hope: Integration of Palliative Care in Chronic Pediatric Disease

A training curriculum developed by the Johns Hopkins Berman Institute of Bioethics aimed to integrate the principles of paediatric palliative care into the care of individuals living with Sickle Cell Disease (discover more here).

Sickle Cell Disease - Duke University

Some videos on key aspects of Sickle Cell Disease management developed by Duke University (watch them here).

American Society of Hematology (ASH) – Sickle Cell Disease Course

The Sickle Cell Disease Course developed within the ASH Benign Hematology Curriculum (BHC) is a series of free, web-based videos designed to supplement education in Sickle Cell Disease for fellows (learn more here).

Rethink Sickle Cell Disease

Rethink Sickle Cell Disease publishes educational contents on Sickle Cell Disease Pathophysiology, vaso-occlusive crises in Sickle Cell Disease and their clinical and societal impact

South Thames Sickle Cell & Thalassaemia Network (STSTN)

STSTN is a haemoglobinopathy collaboration led by healthcare professionals, including consultants, nurses, psychologists and others, across different members in UK. It includes relevant information for Sickle Cell Disease patients

2019-2020 ASH Clinical Practice Guidelines on SCD

The American Society of Hematology (ASH) initiated an effort to develop clinical practice guidelines on Sickle Cell Disease (SCD) to identify best practices for the management of acute and chronic complications of SCD and ways to improve the quality of care for patients.

It is essential to provide updated treatment guidelines that reflect the newest evidence about the disease, ensuring the medical community can better treat SCD and people with SCD can make the best decisions for their care.

Here following the available guidelines:

You can discover more in the following infographics:


Approximate model for online resource library for ARISE could be a hybrid of the webpages for sickle cell   and the website for HRSA HIV/AIDS Bureau . This might serve as a Library or Toolkit for the education/training activities in Work Packages 2, 4, 5, 7 because some material is core information that is good for educating families, counseling, training CHEW, and even training clinicians.

  1. Content stored online, has keywords or clustered in webpages to allow search for topics and for audiences
    1. PDF text
    2. Pictures and infographics
    3. Videos? Podcasts?
    4. PowerPoint presentations
    5. Clinical guidelines and Model programs for specific clinical scenarios  – these can be presented in different ways but I really like the HIV/AIDS Bureau examples.
      6. Clinician training video
  2. Download modules of materials