Dear Forum users:
The discussion forum is open to MDS patients, family, carers, health care professionals and anyone affected by MDS.
You may freely browse the various discussion topics available within the forum as a GUEST. To join and contribute to any of the discussions, you will need to supply a valid email address and choose a user name and password to become a MEMBER
MDS Patients Forum
The messages can be read by anyone as a guest user. - But if you wish to respond or write a message - you will need to register - this Message Forum is anonymous and only requires a valid email address.
How to Register
Please read our registration guide first. For a full MDS UK Membership, you need to contact the main office via telephone or email - and request a patient information pack:
We take your data very seriously:
- Your email address is used ONLY for the discussion forum, it is not visible to other forum members and is not made available for any other use.
- Once you have joined the forum, you may freely contribute to the various discussions, and may also send private messages to other forum members within the forum using the forum messaging system. Be reassured that your email address is not divulged.
Keeping the forum spam-free:
- In order to avoid spam and fake registrations, all new registrations to this online forum have to be approved individually by a staff member.
- It may take 1 to 2 days to be approved during weekdays - or the following Monday if you register on a weekend.
Confidentiality and safety:
- Never post your contact details (email address, telephone numbers, address etc)
- 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.
Clinical information on the forum:
- PLEASE BE AWARE THAT THE FORUM IS NOT MONITORED FOR CLINICAL ACCURACY.
- If you receive information that is of interest to you, check it with your own physician.
- If you require specific assistance, or information for yourself or a MDS patient you are helping/caring for, please contact MDS UK first so we can provide the specific help you need.
- Users that had registered with the old version discussion board will need to have their password re-set to access this upgraded discussion board.
- If you experience any problems with registration or messages on this discussion board, please contact our main office or our webmaster: firstname.lastname@example.org.
Peer to Peer Support
Evidence has shown that peer to peer support is important to people coping with cancer. In the words of Lidia Schapira, MD, FASCO
Peer support, in person or through web-based platforms, lets a person vent their frustration, learn about new treatments or research protocols, and exchange information. The key to how this works is likely quite simple. Knowing that others have had similar experiences and that they can help may make all the difference in how someone lives through the challenge of cancer. People with peer support can learn how to communicate better with the health care team because of the experience of others. This can lead to better preparation for cancer treatment and empowerment to ask more questions.