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Syndrome UK


Diamond Syndrome

is a rare genetic


We are here to support UK patients and families affected by SDS.

There are approximately 60 known patients in the UK and we estimate there are 1,500-2,000 patients in US and Europe

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Be there for someone with SDS

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I Care

For Super Rare

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You can make a difference.

We are a small charity with big ambitions to help all those affected by SDS.


Your donation takes us one step closer to achieving

our fundraising objectives.

Make a donation


There's no better way to make an impact than to become an active advocate yourself. Join us and start a challenge to raise money!

Fundraise for us

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and updates from SDS UK.

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Join the Team

We’re always looking for committed members to join as

Trustees or co-opted members.

If you’re interested, we’d love to hear from you!

Join the team

  • Developmental delay with potential psychological and social problems
  • Increased risk of developing blood cancers such as myelodysplastic syndrome (MDS) and acute myeloid leukaemia (AML)
  • Faltering growth / poor stature
  • Dental problems
Common Symptoms Include
  • Poor digestion caused by pancreatic insufficiency (SDS is the 2nd most common cause of this after cystic fibrosis) which leads to excessive and fatty stools
  • Reduced levels of fat soluble vitamins
  • Haematological abnormalities and reduced immune system
  • Skeletal abnormalities
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SDS UK was formed in 2016

Our Mission is to support UK patients and families affected by SDS by:

SDS UK is a Registered Charity: 1164269

Fundraising to meet charity objectives
Supporting the development of an adult clinic and transition from paediatric to adult care
Promoting access to health and educational services resources
Providing forums for families patients medical professionals to connect
Supporting research into the pathophysiology of SDS and potential treatments in particular a dedicated UK Patient Registry



Syndrome UK

Downloadable hospital admission folder
Shwachman what

We’ve all heard this before -so we’ve created a printable flyer with common symptoms to hand out to clinicians, schools, and the general public and a hospital Admission folder that you can have on hand with all your vital medical and consultant’s details.

Did you know
There are only 2 specialist adult clinics in the UK
SDS is so rare that every part of a donation has a direct impact on patients lives
Patients have to travel to different hospitals or clinics often miles away from home for their specialist care
Help is desperately needed for funding research and generating awareness of this little known disease
77 of parents living with someone with a rare bone marrow condition often or always feel anxious about their childs condition
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People living with a rare bone marrow condition are over 4 times more likely to be lonely than the general population
48 see friends and family members less regularly as a result of the condition
star bullet point referencing facts from the National report on the experiences of those with Rare conditions affecting the Bone Marrow

Findings from Rare Voices: A National Report on the Experiences of those with Rare Conditions Affecting the Bone Marrow.



Syndrome UK

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Don't forget to mention

us in your socials!!

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Fundraise and donate to Shwachman-Diamond Syndrome UK

SDSUK Fundraising flyer template

Use our pre-designed poster

Download link for SDS Fundraising pack

Download our fundraising pack to maximise your efforts

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You can donate through one of the following ways Follow the links below We thank you for your support
click the link to donate to SDSUK by eBay
click the link to donate to SDSUK through CAF -charities aid foundation
click the link to donate to SDSUK by easy fundraising
click the link to donate to SDSUK by JustGiving
click the link to donate to SDSUK by Paypal

Scan the QR code to donate through JustGiving checkout - 100% of donations go to SDSUK



Syndrome UK


Read the latest community & charity news here

Download SDSUK summer 2023 newsletter

Summer 2023

Summer 2022

Download SDSUK summer 2022 newsletter

Introducing our F.A.B (Families Advisory Board!), community news and an note from our American friends.

An exciting issue - Cambridge hosted the 10th International Congress on SDS, The BTFHBM project and much more!



Syndrome UK

SDSUK family day and BBQ

SDSUK Events 2024

SDSUK young adult fun day
Super Rare but not alone events - find your nearest event and sign up to help raise awareness and funds for your charity

Super rare event takes place through February and March 2024

Join our Just giving campaign:


what's the big dream on your new year's resolution? to run the bath marathon for SDSUK?
secure your place on one of the greatest half marathons in the uk

Building on the success of the family day 2023

We propose a ‘young adult’ SDS funday

- ages 16+ in April / May date TBC

and a family funday / bbq - summer 2024

It would be wonderful to see teams at the family day from SDSUK, BTFHBM, Clinicians and Psychologists

We have runners for SDSUK in The Great North Run and Bath Marathon this year!

Better together for healthy bone marrow

The Better Together for Healthy Bone Marrow (BTFHBM) project consists of six rare bone marrow failure charities.

We are already seeing our community benefit from working together as part of a National Lottery Community Fund Grant funded project.

We can now offer Mindfulness courses, coping with stress and anxiety courses and access to benefits information.

Psychological help can also be accessed via our emotional wellbeing co-ordinators Becky and Heather.

Our collective communities will benefit greatly from this project they will be better informed less isolated more connected and ultimately more resilient
click to download the Rare Voices report
BTFHBM Resources
Click to download the Super Rare School Pack
Benefit Advice and support link - click to find out detailed information
Click to download the Better together for healthy bone marrow newsletter
Emotional Wellbeing support - click to find out detailed information and register interest
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Syndrome UK


Marrow Donation

There may come a time when our loved ones with SDS need a bone marrow transplant and donors like you are vitally needed.

Here in the UK there are a number of ways you can donate bone marrow, each registry has slightly different criteria to meet but don't worry you only have to sign up to one and they will anonymously share information.

Follow the links below to sign up and potentially save a life

Heather’s DKMS swab

“I didn’t realise signing up to the bone marrow registry was as simple as taking a cheek swab! Watch my video below to see just how easy it is”


  • aged between 17 (minimum age) – 55 (maximum age)
  • in general good health
  • Body Mass Index (BMI) under 40
  • not already registered on another bone marrow registry
  • UK resident at a permanent address for two years minimum
  • haven’t recently requested a swab online from DKMS.

Welsh Bone Marrow Donor Registry
British Bone Marrow Registry

  • male blood donors who are between 17 and 40 years old
  • women who are aged between 17 and 40 and from black, Asian, minority ethnic or mixed (BAME) backgrounds
Anthony Nolan

  • Donors aged between 16 - 30 to join their stem cell registry.
Each Registry has detailed information on what is involved