What is the forum for? This forum is designed to provide peer support to MDS patients, family and friends. It’s a safe space to share your stories and concerns, learn about new treatments or clinical trials, and exchange information. Knowing that others have had similar experiences to you can make all the difference in how you live through the challenge of having a rare blood cancer.
Do you require MDS help or assistance?: If you require specific assistance, help or information for yourself or an MDS patient you are helping/caring for, please contact MDS UK first so we can directly provide you with the specific help you need.
Email us on: email@example.com
Or call Tel: 0207 733 7558
Specific issues and assistance we can help with are:
- Further information regarding your MDS diagnosis or sub-type of MDS
- Referral to a MDS specialist centre
- Access to treatment and regional differences
- Access to specialist nurse or counselling
- Iron overload and information about iron chelation
- and many more issues
How to become a member: Once we have your full contact details, we will grant you access to the forum, post you an information pack and add you to our regular distribution list as a registered member of the Support Group.
Online: Become a member by filling out the online membership form https://mdspatientsupport.org.uk/join-m ... ort-group/.
By Email: Become a member by emailing our membership team with your name, address and phone number to firstname.lastname@example.org
By Post: Become a member by writing to us with your name, address and phone number at:
- MDS UK Patient Support Group
Bessemer Wing, Kings College Hospital
Denmark Hill, London SE5 9RS
To add to a discussion or to start a new topic you need to be a registered member.
All email addresses are verified by a confirmatory email sent to the email address that you enter when registering - you must click the link given in the email for your user login to be activated.
Due to regular spam/fake registrations, all new registrations to this online forum have to be approved individually by a staff member.
This means it may take 1 to 2 days to be approved during weekdays - or the following Monday if you register on a weekend.
Apologies for that - but this is the only way to keep our forum spam free.
Your email address is carefully protected and we do not release email addresses to anyone. - And we do not SPAM!
Member privacy, confidentiality and safety: Your account username will be anonymous, we don’t publish members’ names or details.
Please do not post your contact details (email address, telephone numbers, address etc) when posting content to this site as this can be viewed by the general public. Many users share their first names when they make a post as it’s nice to be on first name basis with the group members, but this isn’t essential.
Information in messages sent using the PM (Private Message) button is more secure and should be used if you are exchanging contact details with another member.
Report any inappropriate content: To report any inappropriate content or abuse or to raise any other concerns about this forum please contact email@example.com.
Which folder to post in?: Please, please, please try to find a relevant place under an existing heading/folder to write any new posts. This will help keep the forum more understandable - and it will be easier for everyone to find what they need.
What to post?:Please be aware that this forum is not monitored for clinical accuracy! The forum is a "patient led" tool and is intended as a platform for exchange of support between patients, carers and others affected by MDS.
So saying, introduce yourself and give the group an insight into your experience with this disease, give us an update on your treatment, ask questions about MDS, share MDS experiences and information.
We try not to get involved with the messages on this forum - as it is there for patient-to-patient support only, so please do not send the MDS UK Patient Support team private messages via this online forum - but contact us directly on our main email address.
Lastly: If you have received help from contact with MDS UK - please do tell your haematologist and nurse specialist. Ask them to always hand out our leaflets to newly-diagnosed patients when they are told they have MDS. This will help all future patients and families.
Thank you for reading