Resources

Resources

From booklets for kids to information for adults, schools and health care professionals we have a whole range of resources for you to use. Plus, research, reports, all of our newsletters and other useful materials.

Crizanlizumab – A Simple Guide

For the first time in over 20 years, a new treatment for sickle cell has been made available on the NHS. Crizanlizumab will be made available on the NHS under a Managed Access Agreement (MAA), following the National Institute for Health and Care Excellence’s (NICE) recommendation of crizanlizumab as an option for preventing recurrent sickle cell crises.

Find out more about this new treatment with our simple guide: www.sicklecellsociety.org/crizanlizumab/ 

Anthony Nolan Sickle Cell and Stem Cell Transplant Information leaflet

The Sickle Cell Society are pleased to have worked with Anthony Nolan on their S...

Autumn Newsletter 2022

Autumn Newsletter 2022 In this edition of our newsletter, get an update from Nor...

Anthony Nolan Sickle Cell and Stem Cell Transplant Webpage

The Sickle Cell Society are pleased to have worked with Anthony Nolan on their S...

Impact Report 2021/2022

The 2021/22 Impact Report is a shorter and easier to read version of our Annual ...

Global Cure SCD 2021 Presentation

‘Global Cure SCD 2021 Presentation On Oct 2nd 2021,we spoke at the VUMC virtua...

Spring Newsletter 2022

Spring Newsletter 2022 In this edition of our newsletter, get an update on the N...

‘No One’s Listening Report’ Explained – An Inquiry Into Sickle Cell Care

‘No One’s Listening Report’ Explained – An Inquiry Into Sickle Cell ...

Positive Action: How do you encourage others to advocate for change?

Positive Action: How do you encourage others to advocate for change? On 29th Nov...

Westminster Hall Debate

Treatment of Sickle Cell (Westminster Hall Debate) On Wednesday 8th December, th...

Write to Your MP (No One’s Listening Report)

Write to Your MP (No One’s Listening Report) On Monday 15th November 2021,...

Coronavirus and Sickle Cell Live Q&A – 5th November 2021

Coronavirus and Sickle Cell Live Q&A Friday 5th November 2021 Over a year on...

Emmanuel Amuta Poetry Award 2021 Winners

Emmanuel Amuta Poetry Award 2021 Winners The Sickle Cell Society’s Emmanue...

Autumn Newsletter 2021

Autumn Newsletter 2021 In this Autumn edition of our newsletter, get an update o...

Sickle Cell Patient’s ‘Excruciating’ Wait for Pain Drugs: BBC South East

Sickle Cell Patient’s ‘Excruciating’ Wait for Pain Drugs: BBC ...

Impact Report 2020/21

The 2020/21 Impact Report is a shorter and easier to read version of our Annual ...

42nd Annual General Meeting 2021

42nd Annual General Meeting 2021 On Saturday 11th September 2021, we joined with...

Turn up the Volume (Spoken Word Event)

Turn up the Volume (Spoken Word Event) On Friday 4th June the Sickle Cell Societ...

Sickle Cell Disease in Childhood: Standards and Recommendations for Clinical Care

Sickle Cell Disease in Childhood: Standards and Recommendations for Clinical Car...

APPG Hearing on access to medicines hearing

APPG Hearing on access to medicines hearing On Wednesday 28th April 2021 the All...

‘Your Voice’ on Yanga TV – A Tribute To Richard Okorogheye

Tribute To Richard Okorogheye (‘Your Voice’ on Yanga TV) Our NHS Engagement ...

Sickle Cell World Assessment Survey (SWAY) – A Discussion

Sickle Cell World Assessment Survey (SWAY) – A Discussion Watch an in dept...

Spring Newsletter 2021

Spring Newsletter 2021 In this Spring edition of our newsletter, view our COVID-...

In Conversation with Professor Dame Elizabeth Anionwu

In Conversation with Professor Dame Elizabeth Anionwu Come and join us for a con...

Charity Walk for Sickle Cell

Charity Walk for Sickle Cell Willesden Walk for the Mayor of Brent’s Chari...

Sickle Cell Workout with @sicklefitkech

Sickle Cell Workout with @sicklefitkech The Sickle Cell Society’s Hackney ...

BBC London: Sickle Cell and Rare Diseases

BBC London: Sickle Cell and Rare Diseases Lead Sickle Cell Mentor, June Okochi, ...

Getting the COVID-19 Vaccine: Sickle Cell Patient Stories

Getting the COVID-19 Vaccine: Sickle Cell Patient Stories We joined with Dr Rach...

Sickle Cell, COVID-19 & Vaccination (Presentation and Q&A)

Sickle Cell, COVID-19 & Vaccination (Presentation and Q&A) On Wednesday ...

Learn about the COVID-19 Vaccine with Dr Anna Goodman

Learn about the COVID-19 Vaccine with Dr Anna Goodman We talked with Dr Anna Goo...

Sickle Cell: The Global Perspective (World Sickle Cell Day Webinar)

Sickle Cell: The Global Perspective (World Sickle Cell Day Webinar) On Friday 19...

Know Our Patients (KOP) Sickle Cell Personal Experiences

Know Our Patients (KOP) Sickle Cell Personal Experiences Listen to the personal ...

Autumn Newsletter 2020

Autumn Newsletter 2020 In this Autumn edition of our newsletter, see our letter...

Tell Your Story

Tell Your Story Over half term (31st October), the Our Journey, Our Story projec...

Parent’s Panel 2 – Hackney Engagement Project

Parent’s Panel 2 – Hackney Engagement Project The third installment of the H...

Virtual Children’s Holiday 2020

Virtual Children’s Holiday 2020 On Friday 14th August to Sunday 16th Augus...

Layla and Suki – Blood Donors Save My Life (SCS & NHSBT)

Layla & Suki – Blood Donors Save My Life (SCS & NHSBT) Mum of one ...

Turn up the Volume on Blood Donation

‘Give Blood, Spread Love, England’ The Sickle Cell Society’s b...

Men’s Panel – Hackney Engagement Project

Men’s Panel – Hackney Engagement Project The second of the Hackney E...

Coronavirus and Sickle Cell Live Q&A – 11th September 2020

The Sickle Cell Society’s third Coronavirus (COVID-19) and Sickle Cell Liv...

Sickle Cell Society AGM 2020 (Virtual)

Sickle Cell Society AGM 2020 (Virtual) The 41st Annual General Meeting (AGM) of ...

Impact Report 2019/20

2019/20 Impact Report The 2019/20 Impact Report is a shorter and easier to read ...

Parent’s Panel – Hackney Engagement Project

Parent’s Panel – Hackney Engagement Project The first of the Hackney...

1ne – Episodes ft. J Auburn (Sickle Cell Song)

  1ne – Episodes ft. J Auburn (S ickle Cell Song) 1ne (@SoulBrother1n...

Coronavirus and Sickle Cell Live Q&A – 5th June 2020

The Sickle Cell Society’s second Coronavirus (COVID-19) and Sickle Cell Li...

Coronavirus and Sickle Cell Live Q&A – 15th May 2020

Coronavirus and Sickle Cell Live Q&A – 15th May 2020 The Sickle Cell S...

Spring Newsletter 2020

Spring Newsletter 2020 In this Spring edition of our newsletter, see the highlig...

Sickle Cell Children’s Holiday 2019

Sickle Cell Children’s Holiday 2019 Highlights from the 2019 Sickle Cell S...

Sickle Cell Work and Employment: Final Report

Barriers and Enablers to Employment: Black Disabled Peoples Living with Sickle C...

Findings from Sickle Cell World Assessment Survey (SWAY)

The Global Burden of Sickle Cell Disease: Findings from Sickle Cell World Assess...

Professor Dame Elizabeth Anionwu at Mayor of Brent’s Festive Fundraiser

Professor Dame Elizabeth Anionwu at Mayor of Brent’s Festive Fundraiser Si...

The Path to Parliament

The Path to Parliament In June, Courteney spoke in Parliament about her experien...

Trance

Trance An animation about sickle cell disease. Director: Luxi Rong Sound Designe...

Portraits of Pain

Portraits of Pain Portraits of Pain is a short film by June Okochi exploring wha...

Mayor of Brent Donates Blood

Mayor of Brent Donates Blood 40,000 black blood donors needed to help save lives...

Global’s Make Some Noise // Sickle Cell Society on Capital FM Breakfast

Global’s Make Some Noise // Sickle Cell Society on Capital FM Breakfast Gl...

The Untold Stories of Sickle Cell – Teonna’s Story

The Untold Stories of Sickle Cell – Teonna’s Story Teonna is 27 years old. S...

Miai on Capital FM

Miai on Capital FM A young girl named Miai shares her story about living with si...

Autumn Newsletter 2019

Autumn Newsletter In this special edition of our newsletter: 40 Highlights from ...

The Untold Stories of Sickle Cell – Emmanuel

The Untold Stories of Sickle Cell – Emmanuel Emmanuel is 41 years old. He grew...

Sickle Cell Work and Employment

Sickle Cell Work and Employment Sickle Cell Work and Employment – A Guide...

Impact Report 2018/19

2018/19 Impact Report The 2018/19 Impact Report is a shorter and easier to read ...

Omega Live TV Interview

Our NHS Engagement lead, Iyamide Thomas, in the Omega Live TV studio to discuss ...

A Parent’s Guide to Managing Sickle Cell Disease

If you are told your child has sickle cell disease you will probably have lots o...

Spring Newsletter 2019

In our Spring edition newsletter you can read about the Sickle Cell Society̵...

What is Sickle Cell Disease?

What is Sickle Cell Disease? Click here to download the full booklet

Helpline Leaflet

Sickle Cell Helpline Leaflet Check out our Helpline leaflet all about our Helpli...

Miai & Ama – Sickle Cell Disease

Miai & Ama – Sickle Cell Disease – A video by NHS Give Blood Mia...

SIKUL SEL Song – Sierra Leone

Sikul Sel Song – by pupils from a Sierra Leone school and Sam Macauley Sikul S...

Autumn Newsletter 2018

Autumn Newsletter 2018 The Sickle Cell Society Autumn Newsletter is now out! Thi...

Hope for Sickle Cell

Hope for Sickle Cell Tinu lives with sickle cell disorder. She and her doctor, D...

Sickle Cell Society: GSK IMPACT Awards

Sickle Cell Society: GSK IMPACT Awards This video was developed as part of the a...

Sickle Cell Service Review – Facebook Live

Sickle Cell Service Review – Facebook Live A Facebook Live with NHS Englan...

My Name is Jacob

My Name is Jacob Nine year old Jacob talks about his life with sickle cell, and ...

BBC Breakfast: Gaps in sickle cell care and awareness

BBC Breakfast: Gaps in sickle cell care and awareness Noel Phillips asks sickle ...

Children’s Holiday 2016

A video from our Children’s Holiday in 2016. Every year we run a children&...

Impact Report 2017/18

For the first year ever the Society are proud to present the 2017/18 Impact Repo...

Parents’ Stories

Parents’ Stories You can download the full Parents’ Stories here You...

Standards for the Clinical Care of Adults with Sickle Cell Disease in the UK – 2018

The Sickle Cell Society in partnership with the UK Forum on Haemoglobin Disorder...

Winter Newsletter 2018

2017 has been a positive year. Despite austerity, uncertainty and lots of challe...

Order Sickle Cell Society pin badges, place cards and wristbands!

John James shows off his Sickle Cell Society pin, as the mayors of Southwark and...

2017 Children’s Holiday Information Book

This information booklet is for parents and carers of children attending our 201...

SCS Newsletter Summer 2017

Our summer newsletter is here, and we have all the exciting stories. Read all ab...

ASH Pocket Guides for healthcare professionals

The American Society of Hematology has produced three “pocket guides” on sic...

SCS Newsletter Winter 2016

The Sickle Cell Society’s Winter 2016 newsletter is now available! Read all ab...

Piloting a new Patient Reported Experience Measure for Sickle Cell Disease: A Report of the Findings

First nationwide sickle cell survey identifies awareness as key to healthcare im...

Sickle Cell Disorder and Sickle Cell Trait

Sickle Cell Disorder And Sickle Cell Trait is a short leaflet explaining key poi...

Pain management guidelines for sickle cell

The Sickle Cell Society helped develop these most recent guidelines for manageme...

Standards for the Clinical Care of Adults with Sickle Cell Disease in the UK

  For the latest edition of the Sickle Cell Standards click this link: www...

SCS Newsletter Winter 2015

Our Winter 2015 newsletter is now available! From a report on our Children’s H...

Sickle Cell: The History, Legacy and Achievements

Highlights from the Sickle Cell Society’s Black History Month event in 2015. T...

Travel insurance for sickle cell

This list is collated from experiences of people with sickle cell, who have foun...

Sickle Cell Society and Information Standard

The Sickle Cell Society achieved the Information Standard in 2011. The Informa...

Did You Know Age 5-10: an information booklet for children

Did You Know Age 5-10 is a booklet for children aged 5-10 explaining sickle cel...

Did You Know Age 11-16: an information booklet for young people

Did You Know Age 11-16 is a booklet for young people aged 11-16 explaining sic...

The Sickle Cell Trait Toolkit

We get lots of questions about sickle cell trait. From risks relating to sport,...

Let’s Talk About Sickle Cell: sickle cell awareness poster

Let’s Talk About Sickle Cell is a brand new resource prepared by the Sickle Ce...

The Family Legacy

This short drama explores the issues surrounding inheritance of sickle cell and ...

Inheritance of Sickle Cell Anaemia

Introduction to the Inheritance of Sickle Cell Anaemia Everyone has two copies o...

Kye Gbangbola on This Day Live

Kye Gbangbola on This Day Live Chair of the Sickle Cell Society, Kye Gbangbola, ...

SCS Newsletter- Summer 2015

The Summer 2015 Newsletter is here! Click here to download [pdf] To receive Sic...