In order to support and stimulate the development of WM Patient Support Groups in the various European countries, we opened a new page "Patient Support" on this website:
Patient Support (1)
The need for Patient Support groups: a call on volunteers
A patient support group appears very helpful to share experiences about your illness with other people.
However, because Waldenström’s Macroglobulinemia (WM) is a very rare disease, only few countries in Europe have a WM patient support group. In some countries organizations for (Non Hodgkin) Lymphoma give information about WM, but don’t organize contacts between WM patients.
On this EWMnetwork website you can find under the entry “ Useful addresses” existing patient support groups or contact persons for WM in some European countries.
In many countries there is no WM patient support yet.
Therefore an urgent call on volunteers is made, to become a contact person in your country for WM patients, or to start a WM patient support group (see Patient Support 2) or to become a mentor in an on line social WM community (see Patient Support 3).
If you like more information, please send an email to firstname.lastname@example.org
Patient Support (2)
a. How to start a patient support group
For countries with a central registration of diseases, one of the first steps in organizing WM patient support is to get in touch with the national cancer organization or a blood cancer organization for (Non Hodgkin) Lymphoma and find out whether there is any patient support for WM. Your local hospital may help you in this. The national or blood cancer organization can help to circulate information about WM support in their home pages and magazines and probably help you to find and invite people for a first WM meeting.
In countries without a central registration of diseases, the first step is probably via your WM specialist and search via internet. More suggestions you can find below.
b. How to start a patient support group
“Emotional and social support for people living with a rare disease is as important as medical care. Patients, their families, friends and caregivers can learn to better manage their cancer experience by increasing their familiarity with the disease, gaining a positive attitude, and developing coping skills. Support can come from family and friends as well as health
professionals, support groups, or your place of worship."
When you like to know more about how to start a patient support group on WM, the above mentioned website of Myeloma Euronet offers ( under the entry “ resources”) very informative information about such items as
Why form a support group?
What kind of support group should I form?
Where can I find other members?
What kind of group is best for us?
What should we do first?
How should we run our meetings?
What is the role of caregivers in the group?
What sorts of special activities can we do?
How can we keep the group going?
How should we cope with loss?
Joining a national organization
c. How to start a patient support group
On the website http://www.ehow.com/how_6109617_form-organize-support-group.html you can also find some instructions, tips and warnings.
Patient Support (3)
Getting the most from your doctors appointment
Many patients report that they don't have enough time, have the opportunity to ask questions, know what to ask, or what to expect when they go to see their doctor. But understanding each other is the key to a successful doctor patient relationship.
All patients are different and therefore the degree to which they want to be involved in their treatment and care will vary. There are no rights and wrongs to this, other than you having the right amount of information and the type of relationship with those caring for you that you are happy with.
Being informed about your disease and having a positive partnership with your doctor can provide many benefits, including feeling more confident that your doctor understands your needs and concerns and working with your doctor to find the right treatment option that suits you.
The following list may provide some useful tips for helping you to work in partnership with your doctor to make decisions about your treatment and care:
Make notes regarding you and your family's medical history. This includes addressing questions such as:
Were there any severe diseases, operations or hospital stays in the past?
Are there any other diseases I am currently living from? Which medications do I take? Are there any drugs I do not tolerate very well?
Carefully watch your symptoms and keep taking notes on how you feel from day to day - even seemingly unimportant or embarrassing symptoms can be important.
Did you see any (other) doctor to look after those symptoms? How were they treated, and what was the result?
Obtain as much information as you feel helps you to understand the disease you are living with (talking to other myeloma patients; books; brochures; Internet, etc.). If you cannot obtain this information by yourself ask others for help.
Get a glossary (a dictionary explaining technical terms) where you can look up expressions that are difficult to understand.
Be wary of information coming from unknown sources, and always compare the information with what you have already learned or asked someone who is medically trained to check it for you.
If possible, try to obtain information on relevant clinical trials and consider participating in such a trial (looking at both the advantages and disadvantages).
Preparing for a consultation
Consider asking a trusted person to go along with you to the appointment.
Prepare your notes and take them with you.
Try to write down any questions you might want to ask in advance as it is easy to forget them when you only have a short time with your doctor.
During the consultation
When discussing treatment options, always ask about prospects; risks; side effects; duration of treatment; instructions for using drugs; contraindications; what to do in case of intolerance; other treatment options; clinical trials; the option to sit and wait to see what happens; additional treatment or care options (e.g., psycho-oncological care).
Make sure you have received answers to all of your questions and ask for a copy of your medical results.
Don't forget to take notes or ask the person who is with you to do that for you.
Always ask if there is something that you don't understand. You have the right to medical information that is explained to you in a way you can understand.
Were all treatment options, your treatment plan and next steps fully discussed?
If there wasn't enough time, ask for a second appointment to follow this up.
Ask for any supplementary information they may have on the things you have discussed.
Always consider getting a second opinion if you are not satisfied and tell your doctor about it. Professional doctors will not have an issue with this.
Be realistic and don't let anyone push you towards a certain treatment. Take your time and make sure you take an informed decision that really suits your needs.
Online social networks and fora
Apart from the above mentioned information, we also like to mention patient support via social media or via an online forum.
In Europe Eurordis ( www.eurordis.org) works on online social networks for various online diseases in five languages, see www.rareconnect.org./en/community/waldenstrom-macroglobulinemia
The International Waldenström’s Macroglobulinemia Foundation (www.iwmf.com) for instance has an interesting talklist IWMF-Talk.
A short summary of the Eurordis project “Rare Disease Communities” and how it works
Source: Eurordis. See also www.rareconnect.org
“The Rare Disease Communities project is part of the strategic partnership signed in 2009 between Eurordis, the European Rare Disease Organization and NORD, the National Organization for Rare Disorders. The communities are guaranteed by Eurordis and NORD with a view towards fostering international collaboration amongst patient groups and protecting the voice of patients from purely commercial interests.
The main idea behind the project is to create an online social network for patients and caregivers
living with rare diseases in order to enable the sharing of experiences and increase access to quality
information. International patient organizations collaborate to develop these communities along
with Eurordis and NORD. Patient organizations play a key role in governing and communicating to
the community, recruiting forum moderators, and being sources of information to patients and
The website is split into three sections: What, Meet, and Learn.
The What section features patient
stories and blog style updates from patients and patient organization representatives.
The Meet section is a forum, moderated by volunteers and offering human translation services across 5 languages: English, French, Spanish, Italian, and German, with 20 language pairings. Since patients and families are spread thinly across the globe, it is vital to create a space where information can be shared with the best possible translation.
Finally, the Learn section is a resource of information in the form of frequently asked questions, documents, recently publish news and scientific articles, upcoming events, and patient organization's contact information.
Users interested in discussing these diseases register on the website. After registering, users can upload their story on living with the disease through a link in their profile page. The story then automatically is added to the What section and is translated into all of the platform's languages.
Users can also participate in Forum discussions or post their own questions. If users see a message on the Forum that is not in their language (French, German, Italian, Spanish, or English), they request a translation be made. Within a few hours, the message is translated and uploaded automatically to the website. The user that requested the translation is also sent an email with the translated content.
The project is financed by European Commission, the French Telethon (AFM) and the French
Federation of Pharmaceuticals (LEEM) and a diverse array of corporate partners who play no role in
the operation of these communities.
Any questions on the Rare Disease Communities project can be addressed to Rob Pleticha, the Online Patient Communities Coordinator at Eurordis at: email@example.com. ”
We call upon volunteers ( English, French, German, Italian or Spanish speaking) to help to expand the online WM community.
If you are interested to become active as a mentor in the online WM social network, please contact firstname.lastname@example.org