Key organisations
for patients and their loved ones
Patient organisations and peer associations
Below you will find an overview of various patient organisations and support groups where you can go with your questions and needs.
Click on the organisation's logo to go directly to its website for more information.
If you are having difficulty contacting a particular organisation, please send a message to SuperNils (contact details in the header of our website) and we will endeavour to provide you with the correct information.
ALWB - Action Lymphoma Wallonia-Brussels
A French-speaking association, in Belgium, for patients with lymphoma. Our team of volunteers guides, informs and supports patients in remission and treatment of lymphoma.
Casa Callenta
A warm home for and by fellow cancer patients, where our hosts and hostesses are delighted to welcome you! A place where you can recharge your batteries, meet people, find information and discover challenges to help you move forward. Friends, family and carers are also more than welcome!
CMP Vlaanderen vzw
An association for people suffering from multiple myeloma (Kahler's disease) and Waldenström's disease.
These diseases are two forms of bone marrow cancer. We are, of course, also there for their family and friends.
Support group for young people with cancer in Flanders
Our group was named FLAYA. The term AYA is short for Adolescent and Young Adult. The letters FL stand for Flanders, which is the English translation of Vlaanderen. So if you want to say it in full, it's best to practise a few times: “Flanders’ Adolescent and Young Adults with Cancer”.
Hodgkin and non-Hodgkin non-profit organisation
A non-profit lymph node cancer association whose main goal is to support Hodgkin's and non-Hodgkin's lymph node cancer patients in their experience as cancer patients. Someone who has been through the same thing understands you better. That is the power of our peer support network, and we want to share that with you.
KiKoV - Leuven
The Children's Cancer Parents' Association affiliated with UZ Gasthuisberg in Leuven. The non-profit organisation was founded based on the experiences of various parents of children with cancer. We felt that there was a need for support and knowledge from parents who were going through the same thing.
Little Prince non-profit organisation
This organisation in Limburg is committed to helping children under the age of 18 who are affected by cancer or another life-threatening illness.
Lotuz
A patient association that brings together and supports people and their loved ones who have undergone stem cell transplants. Our association was founded at the request of Dr Hélène Schoemans of UZ Leuven, who brought together a group of fellow patients to set up a patient association for people who have undergone allogeneic stem cell transplants.
Lymphoma Cancer Association Flanders vzw
This is a support group for people with Hodgkin's lymphoma (Hodgkin's disease), non-Hodgkin's lymphoma, chronic lymphocytic leukaemia, Waldenström's disease, and their partners and families. Our patient association provides you with information about lymph node cancer, but you can also always come to us for a chat among fellow sufferers.
MPN Belgium
This is a private Facebook group for Belgian patients with myeloproliferative neoplasms (MPNs). Private means that only members can read the comments and messages. This ensures a certain level of privacy. The aim is to bring patients into contact with each other so that they can share their experiences with symptoms or treatments.
MYMU Wallonia-Brussels non-profit organisation
A French-speaking support group for patients with multiple myeloma.
Sang pour Sang non-profit organisation
Belgian association for the fight against sickle cell anaemia and haemoglobin disorders. Sang pour Sang vzw, founded in July 2020 in Belgium, aims to combat sickle cell disease, raise awareness, and guide and support patients and their families. We can try to put you in touch. (no link to a website).
Sickle Cell Disease Fighting Club
Here we can only provide a few email addresses. This will enable you to establish contact with the responsible parties.
barbaramabidi@hotmail.com // naomikalungwe@hotmail.com // annancybarbara@gmail.com // scdfcvlaanderen@gmail.com //
The Sickle Cell Collective
Founded by a group of people with sickle cell disease, their families and friends as they faced the lack of information, misunderstandings and misinformation surrounding the condition. The aim pursued is to make the disease known to the public and break the prejudices associated with it through awareness campaigns, education and various partnerships.
ToeKan
An association for cancer patients and informal carers from the Ronse area. The organisation aims to support them by bringing them together for meaningful conversations, to share experiences, to obtain information from each other and from professionals, and to engage in relaxing activities.
Contact: 0472 / 01 28 59 or by post: Rode Mutslaan 179, 9600 Ronse.
Wildgroei non-profit organisation
Support group for leukaemia and lymphoma patients.
Our support group provides information that is not, or insufficiently, covered by the usual channels. The group also improves mutual communication by discussing problems and sharing experiences about the disease process.
Belgian Haematological Society
Umbrella organisation of various patient organisations, specifically for blood cancers.
Be sure to watch the video... To do so, please double-click on the image.
Gynca's
Patient organisation for women with gynaecological cancer, such as uterine cancer, ovarian cancer and cervical cancer
They provide advocacy, information and contact with fellow sufferers.
The organisation operates from Sint-Niklaas, East Flanders.
Brochure haematological disorders EN
In this brochure, you will find more information about the different haematological disorders and the patient organisations that can support you.
Brochure in Dutch.
Brochure Haematological disorders FR
In this brochure, you will find more information about the different haematological disorders and the patient organisations that can support you.
Brochure in French.
Supporting organisations
Some organisations offer all kinds of support to patients and their families. This can range from organising enjoyable holidays and activities to supporting mental wellbeing. Below is an overview of these organisations.
Asbl SuperNils
An organisation dedicated to the mental wellbeing of patients (children, adolescents and young adults) with (haematological) cancer and their family members. We also support scientific research into leukaemia and provide information about the diseases and their treatments to patients, their loved ones and interested parties via our website, podcast and VR project.
Ambulance Wish Belgium non-profit organisation
A wonderful organisation that allows children and adults to enjoy the little things in life one more time. To shake off the gloom of the impending end for a moment. To feel good about yourself again, if only for one day.
The people at Ambulance Wish Belgium help you make the most of that moment before saying goodbye. They make sure your last wish comes true, putting smiles on everyone's faces. So you can go home one last time, or see that musical you've been dying to see, or celebrate Christmas at home with your family. A paramedic and nurse will help make that wish come true.
Huyse settles down
A non-profit organisation that organises activities for children who are affected by cancer in their family.
For €5, you can visit their cosy nest every first Wednesday of the month between 2 p.m. and 4 p.m. You can play, do crafts, go on a treasure hunt, tell your story, eat something tasty, etc.
The organisation is located in Eeklo – Roze 150.
But Huyse Nestelt is more than just a children's organisation. It is a drop-in centre for people with or recovering from cancer and their loved ones and relatives.
Me to You Foundation
Giving leukaemia patients a sense of belonging. Through various projects for support and complementary treatments, ME TO YOU wants to contribute to an optimal quality of life for leukaemia patients and, above all, make them feel first and foremost that they are a person, an individual and that they belong! TOGETHER STRONG! FOR THE PATIENT
My Cancer Navigator Anti-Cancer Fund
Someone who has been diagnosed with cancer or is facing an important decision about treatment is thrown into a rollercoaster ride. Thousands of questions go through your head and it is not always easy to get a clear answer.
My Cancer Navigator is there to help you. The people at this organisation listen to your story and provide tailored information so that you can see the wood for the trees again.
A Clear View of Cancer
Klare kijk op Kanker aims to inform, inspire and support patients and their loved ones by providing clear information about cancer and how to deal with it.
They work with videos that answer frequently asked questions about cancer. And they have a dictionary of medical terms. In short, they try to explain cancer as clearly as possible.
Villa Max
Villa Max organises free, unique, tailor-made holidays for families with a sick or care-intensive child and for young families with a sick parent.
Informative organisations and websites
We are also happy to provide information about organisations and websites where you can find information about your illness and its consequences.
Foundation Against Cancer
On this website, you will find all possible information about cancer (types, different types, causes, consequences). You will also find practical information for everyday life and for emotional support during your disease process.
You will also get information on preventive actions of the Foundation (Tobacco cessation, alcohol, sun). So lots of material to read and use.
Leuven Cancer Institute
Website of the Leuven Cancer Institute (LKI) with various interesting topics and links to informative and interactive sessions.
This may also be of interest to partners and family members of people with cancer!
Cancer information
Free telephone line 0800 15 802, from the Foundation Against Cancer: For all your questions about cancer.
Psychological counselling
Foundation Against Cancer offers free psychological counselling of short duration (max 6 sessions) by phone. Both patients and loved ones can make use of this. Also for bereavement counselling of loved ones, after the death of the patient.
Important: The psychologists working with the Foundation specialise in cancer issues.
High costs!
You sometimes hear it said that cancer makes you poor. Unfortunately, this is also true. Treatment bills can be very high. And if you don't have adequate insurance, this can cause problems. The Foundation Against Cancer can help. .
If a cancer patient is experiencing difficulties paying for the costs of their treatment, they may, under certain conditions, submit a request for financial support to the Belgian Cancer Foundation. Read all about it on the Belgian Cancer Foundation website.
TUKI non-profit organisation
They offer financial, legal, practical, administrative and emotional support to children with life-threatening illnesses.
This applies both during treatment in Belgium and if the child is referred abroad for treatment or surgery. They can also provide support for non-reimbursed medication.
Sumehr, your medical records at a glance...
Your GP keeps your medical records, which contain information about any illnesses and symptoms you have had, the treatments you have received and the medication you are taking.
A Sumehr (Summarised Electronic Health Record) is a summary of that medical file, which doctors can share with other doctors and specialists. Of course, only if they are treating you AND if you have given your consent. Sumehr allows you to receive faster and better, tailored care. This is important if, for example, you have to go to hospital unexpectedly.
You can view your Sumehr via www.cozo.be. You can log in securely with your eID or via Itsme.
Grief and loss organisations
Science has already achieved a lot in research into the treatment and cure of serious diseases, such as cancer. Many people are therefore cured of such a disease and can take back their lives.
However, sometimes things also end badly and the patient dies. Losing a loved one is never pleasant and always has an impact on the lives of those who are left behind. Whether it is an older person or a young person, whether it is a parent, a close friend or your child ... There will always be mourners left behind, people who need to give their grief a place and pick up life again. Some people can do this alone, others need a listening ear or want to talk to people who went through the same thing.
Also know that grieving does not only occur with a final goodbye. Getting a bad diagnosis can also trigger a process of mourning and grief. After all, you have to say goodbye (temporarily) to certain habits in your life (quality of life may decrease, social contacts diminish, not going to work or school, no sports, etc.). We call this "living loss". People facing this also benefit from a listening ear, some support and help.
The following peer support groups and organisations, as well as the book packages listed, can help you with this...
Lost & Co asbl
A warm place for young people and adults who sometimes feel lost: when you have lost someone or when you have lost yourself due to cancer, illness, depression or burnout.
At Lost & Co, you can talk to a ‘companion’ (link to companion page: Companions (lostenco.be)) or do something that makes you feel good (something sporty, creative, kind) with someone who, like you, knows what it means to experience loss. You choose who or what suits you best, and it costs you nothing. Or you can ‘become a Co yourself’ (link to Become a Co page: Become a Co (lostenco.be)) because you want to share your own story with others in a positive way.
In this way, together with many others, we give loss a silver lining. We started in Lier and are continuing to grow in Flanders.
Missing You asbl
A voluntary organisation working across Flanders for children, young people and young adults who have lost a loved one.
Since young people also need time and space to cope with their loss, Missing You wants to (under-)support them in this by, on the one hand, putting them in touch with fellow sufferers and, on the other hand, by sensitising their environment and wider society.
Missing You also has an educational page for at school, as well as at home. You will find educational materials, a book list, a game, and so on. Definitely worth checking out.
Parents of a deceased child
The association ‘Parents of a Deceased Child’ (O.V.O.K.) is open to all parents of a deceased child, regardless of the age or cause of death of the child.
Vilomah non-profit organisation
Vilomah vzw supports families who have lost or are about to lose a child (palliative care). From their own experience, they know that the (imminent) loss of a child is accompanied by countless emotions such as disbelief, sadness, anger, guilt and loneliness. These are very difficult to explain to someone who has not experienced this themselves.
Fortunately, not many parents in our society have to go through this. But that also means that the chance of knowing someone who understands you is very small. Vilomah brings together fellow sufferers and tries to turn their negative experiences into a positive outcome for others who are facing a similar situation. In addition to this peer contact, the organisation also focuses on other activities that benefit these families.
Slowly to heaven
Saying goodbye in a beautiful way. Book and podcast by Evi Hanssen and her mother Arlette, in collaboration with Het Nieuwsblad and lifestyle magazine Billie. Listen to the podcast on our website.
Do you have a child with cancer, or are you yourself an AYA with cancer, and are you looking for opportunities to get some relax and the attention what to distract from your illness, please contact SuperNils. If you have any questions about our services, you can always reach us via the contact form or by telephone. We will endeavour to provide you with the necessary information so that you can proceed accordingly.
You can contact us by telephone at 0475 / 31 85 70, but only on Mondays and Wednesdays between 10 a.m. and 12 noon. If for any reason we do not answer the phone, please leave a message and state your name and telephone number. We will definitely call you back.
Please note that with us, you are in good hands. no medical questions leave behind, because we do not have the knowledge to give medical advice. For this, you can always contact your attending physician whether it nursing staff. Specialised patient organisations or support groups can certainly help you with that. You can find them above on this page.