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/
Blood DonationBreaking Down BarriersDocumentsInformation Standard CertifiedNewsletterResearch ReportScreening ProgrammeSickle cell treatmentsVideo
Red Cell Exchange – treatment information
Red Cell Exchange Following feedback from people living with sickle cell disorde...
Summer Newsletter 2023
Summer Newsletter 2023 In this edition of our newsletter, find out how to join a...
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...
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...