Telephone and email support
We are here to help! If you would like to speak to one of our team, please call us on 020 3096 7858 between the hours of 09:00 and 17:00, Monday to Friday. If we are unable to take your call, please leave us a message with your name and contact details and we will reply to you as soon as we can.
You can also email us at firstname.lastname@example.org
Please note that we are unable to provide medical advice and will always recommend you contact your specialist team for specific advice about your WM.
Facebook Waldenstrom's UK community support group
This is a UK-wide closed Facebook group for patients, family and carers of people with WM. It is a place to encourage peer-to-peer support and foster a sense of community among those dealing with this rare disease.
To join the WMUK closed Facebook group, simply search for “Waldenstrom's UK community support group” on Facebook, or follow this link, and click join. If you have any difficulties accessing the group, please email us at email@example.com
This group is administered by WMUK. It runs alongside our official charity public Facebook page which will continue to share latest news and stories about WM and the WM community.
WMUK email forum on Groups.io
The WM email forum set up on groups.io is open to anyone affected by Waldenstrom's macroglobulinaemia. You will be able to use the group to discuss things like diagnosis and treatment, as well as finding emotional support from other members. Updates about patient advocacy and opportunities to raise awareness or get involved in the WM community are also shared.
The group is sponsored by WMUK and managed and mediated by volunteers. Please note that the charity cannot be held responsible for anything you share on the group and any opinions expressed in this forum by any accounts other than the WMUK account name are those of the individual poster and do not reflect the views of WMUK.
To send a request to join the WMUK Groups.io forum, go to WMUK@groups.io and click on the blue Apply for Membership in This Group button. You will be prompted to create an account. Enter your email address and password fields in the respective boxes and then click the Confirm email account button. Open the email and press Confirm account, which will then take you to your group.io page to input your password and set up your profile. Your subscription to the WMUK forum will be reviewed and approved by one of the moderators. Further information on how to access and use the WM Groups.io forum can be found here.
The International WM Foundation (IWMF) sponsors a global online group discussion forum in English called IWMF Connect, where you can communicate with others, share experiences and insights, exchange information and get emotional support. More information and how to join is available on the IWMF website.
In accordance with current Government and NHS guidelines, we are sadly unable to run face-to-face support groups and events at this time as the safety of our patients and community must remain our utmost priority.
We are currently looking into alternative ways that we can share information and continue to support all those affected by WM, including hosting webinars and podcasts, so please keep checking our What's on page for news and details of upcoming events.
WMUK's Patient-Doctor Summit
Many of the WM community attend WMUK’s national event which takes place each year. This is an opportunity to hear the latest developments in WM, about the work of the charity, and to meet and engage with other patients, carers and expert doctors.
In light of the current and ongoing situation around COVID-19, and to ensure the safety of participants, speakers and staff, we’ve made the difficult decision to move the WMUK 2021 Patient-Doctor Summit online.
However, rather than a one day event, we are planning an exciting programme of Summit sessions, talks, and discussions throughout the month of June. We’ll be releasing more information about the programme, format, and how to register in early 2021. You can sign up to receive Summit updates by emailing us: firstname.lastname@example.org
We know how much WM patients and doctors value the opportunity to meet in person to share experiences, see old friends and make new ones, and to get valuable support from the WM community. We will be looking at opportunities to do this as soon as it is safe to do so.
Other sources of support
You may find it helpful to talk to a clinical nurse specialist or doctor about your diagnosis. They can answer any questions you may have, they may also be able to put you in touch with people who can provide emotional support such as counsellors.
There are some excellent cancer support centres throughout the country, providing free practical, emotional and social support, and advice on living well with cancer.
Macmillan Cancer Support runs centres linked to NHS hospitals.
Penny Brohn UK runs residential courses at their national centre focused on living well with cancer as well as training courses locally and online.
Lymphoma Action organises one-day ‘Live your Life’ workshops for people affected by lymphoma. These workshops help you to live with and beyond your lymphoma diagnosis. They are of particular value to people at (or coming towards) the end of treatment, or if you are on active monitoring (watch and wait).
You may also have a local cancer support centre near to you.
If you live in England and are being treated for cancer, you can apply for a medical exemption certificate which will enable you to get free prescriptions. Your doctor can provide you with an application form which needs to be signed by either your GP or consultant. If you live in Scotland, Wales or Northern Ireland, prescriptions are free for all patients.
There may be special funding or benefits that you can apply for following your diagnosis of WM. Contact your local Citizen’s Advice Bureau for information and help to apply. Macmillan Cancer Support have benefit advisors in the community who offer financial advice.
Macmillan Cancer Support’s online community has an active thread about travel insurance where people with cancer discuss their experiences and recommendations.