Patient associations

You will find below a list of patient associations and self-help groups that cooperate with our hospitals. Fellow sufferers in these groups can be of great support to patients (or relatives of patients). By exchanging experiences and tips among themselves, you can better cope with a certain disease or disorder.

If you cannot find a suitable self-help group or patient association, you can ask for advice from Trefpunt Zelfhulp vzw (the support and expertise centre for self-help groups in Flanders). They provide an overview of all patient associations and self-help groups.

What.

AHOSA vzw is an organisation that aims at the inclusion in the wider society of hearing-impaired or deaf persons who communicate in spoken language. AHOSA vzw empowers deaf and hard-of-hearing people and sensitises hearing society about this invisible disability. Starting from the principle of equality, AHOSA vzw creates opportunities so that every hearing-impaired/deaf person gets a grip on his or her own situation in order to participate qualitatively in society as an independent, fully-fledged citizen.

For whom?

Deaf or hard of hearing people

What?

Within the Flemish Community, we organise and supervise family groups (young) dementia in which family members and informal carers of people with (young) dementia can exchange information, experiences and mutual support. We also stimulate, support and/or organise other activities to support those involved. In addition, we make everyone aware of the possibilities and limitations surrounding dementia. Finally, we promote scientific research in connection with dementia and in connection with counselling of informal carers and family members of persons suffering from dementia.

In concrete terms, this means that a person with dementia and his or her family carer who is being followed up by the hospital's neurologists or geriatricians are informed about the functioning and possibilities of the Alzheimer's League. Information leaflets from the patients' association are available.

For whom?

Persons with dementia and their relatives.

What to do.

ApneuVereniging Vlaanderen vzw is a membership association for apnoea patients in Flanders focused on information and experience sharing.

Members pay an annual membership fee to support the operation of the association:

• they receive the quarterly magazine ApneuKrant and also ApneuMagazine Nederland, the comprehensive magazine of ApneuVereniging Nederland.
• they attend free patient meetings and webinars, with speakers on topics related to sleep apnoea.
• they have access to information on the website reserved for members and friends, such as the digital version of ApneuKrant and ApneuMagazine.
• they can post comments on posts on the website where provided.

Specifically, a sleep apnoea patient who is followed up by the hospital's pneumologist or neurologist is informed about the relevant patient organisation. Patient association information leaflets are available.

For whom.

Persons with breathing-related sleep problems.

What to do.

The Back on Track Fund helps cancer patients get moving in order to take life back into their own hands!

After the shock of a cancer diagnosis and enduring tough cancer treatment, you suddenly have to get back on track with a normal life. Although this transition, from active treatment to life after diagnosis, is very important for the long-term outcome of the disease...suddenly you are on your own.

This same vacuum can also occur in the closest environment of the cancer patient. They too live for quite some time in an existing care circuit and social safety net, which suddenly disappears after the sometimes long treatment period.

The Back on Track Fund wants to fill this gap. In this way, it wants to create a lasting support and fixed value in the care continuity of (former) cancer patients and their loved ones.

For whom?

Persons with and after cancer.

Click here for more information on the initiatives.

Life with an implantable defibrillator (ICD) or pacemaker can be challenging, but in the community of ICD and pacemaker patients we find comfort, understanding and support.

Welcome to our patient association, where we believe in sharing experiences, offering support and creating a community stronger than the challenges we face.

What.

The Braille League:

• accompanies blind and visually impaired persons who wish it throughout their lives in inclusion in society.
• offers to, politicians, actors in social and cultural life and the general public promoting the inclusion of blind and visually impaired persons at all levels its expertise of society.
• supports technological, operational and scientific ophthalmological research.

All this throughout Belgium!

For whom?

Blind or visually impaired persons.

Contact Group Spice aims to help everyone diagnosed with stomach and/or oesophageal cancer, their partners and family members - the fellow sufferers - by sharing experiences with this disease. Contact Group Spice also organises information meetings with experts and stands up for the general interests of fellow sufferers.

COPD vzw is there for people with chronic obstructive pulmonary disease and wishes to inform patients and family members in an understandable and recognisable way about the disease and its consequences. To this end, regular information evenings, walks and contact days are organised and detailed publications are published on the website.

CCV-vzw is the Flemish patient association for people with IBD or chronic inflammatory diseases of the digestive system. Through information and exchange of experiences, we help each other, and try to support everyone's life as qualitatively as possible.

What.

The aim of the association is to promote the physical, mental and social well-being of celiacs and/or dermatitis herpetiformis and related syndromes. It has the following objectives:

• Establishing contacts between celiacs or the parents of celiacs through a quarterly magazine, regional meetings, an annual members' day with side activities and a discussion forum;
• Publicising gluten-free diet products and promoting their distribution;
• Preparing and publishing recipes for gluten-free cooking and baking;
• Publishing useful addresses such as diet shops, restaurants and specialised dieticians;
• Making the terms 'celiac disease' and 'gluten-free diet' more widely known;
• Publishing medical and dietary information regarding celiac disease and the gluten-free diet;
• Promoting the interests of celiac disease patients before the government and the health authorities.

In concrete terms, this means that a celiac patient who is followed up by the hospital's gastroenterologists is informed about the relevant patient organisation. Patient association information leaflets are available.

For whom.

Persons with gluten intolerance or celiac disease.

What to do.

Deinze Stroke Care is a fellow sufferers' group that assists with advice and support and where patient and carer are central. Participation opens doors to expert advice, a listening ear, social support, relaxation and conviviality, closeness, an outing. Bimonthly meeting at the LDC De Bosrank in Deinze. This group is affiliated to the Belgian Stroke Council(www.belgianstrokecouncil.be).

Specifically, a CVA patient who is followed up by the hospital's neurologists is informed about the relevant patient organisation. Information leaflets of the patient association are made available.

For whom.

Persons who have had a stroke (CVA or Cerebro Vascular Accidents).

Contact details

Miriam Mathijs
tel: 0476 33 70 65
e-mail: myriam.mathys@telenet.be

Every 17 minutes, someone in Flanders is diagnosed with diabetes.

1 in 3 people have diabetes without knowing it.

Diabetes affects 1 in 10 Belgians. In 2040 it will even be 1 in 8.

That is why the Diabetes League informs, connects and mobilises everyone affected by the condition. We are independent, and want to pool the energy of all people with diabetes, their environment, healthcare providers, our members and volunteers. Together we strive for a better life with diabetes and a world without diabetes.

A dynamic team of 23 enthusiastic employees, more than 390 active volunteers and 16,000 members is working daily for persons with diabetes and their environment.

A peer group for women with/after a gynaecological cancer.

A listening ear can do wonders. We are here for you, woman to woman.

What?

The Expertise Centre Dementia Flanders and the regional dementia expertise centres want to offer persons with dementia and their surroundings a contact point that recognises the question with expertise, answers it or makes sure it gets to the right place. They want to provide or facilitate opportunities for persons with dementia and their surroundings to exchange information and experiences.

For whom.

Persons with dementia.

The Brain Injury League asbl is a patient organisation that connects all individuals and organisations committed to improving the quality of life of persons with non-congenital brain injury (NAH) and their environment. The League offers direct support to persons with NAH and their informal carers through the Brain Injury Line.

The Hodgkin and non-Hodgkin asbl is a lymphoma cancer association whose main objective is to support Hodgkin and non-Hodgkin 'lymphoma' patients in their experience as cancer patients. Someone who has been through the same thing understands you better. That is the power of our fellow sufferers and we want to share that with you.

Patient empowerment happens on several levels. Through fellow sufferers' contact with experts by experience, through information meetings and by organising a symposium with doctors at regular intervals. The association also defends its interests by participating in various discussions within the pharmaceutical industry and policy discussions at regional and federal level. The board members/contact persons followed training at various umbrella organisations, including Fight against Cancer.

What

Kontakt-Bejaarden vzw is a voluntary organisation that aims to break through loneliness in Ghent. For more than 40 years, the organisation has succeeded in mobilising people to break the isolation of elderly people in the city.

Central to this is the regular home visit. A regular volunteer visits a regular elderly person and builds a friendship relationship. Both experience how enriching the engagement is.

Occasionally, a gathering or outing is organised.

For whom.

Elderly people who are lonely.

What?

Our dream? A world without cancer. Until that happens, we avoid, fight and mitigate cancer. We also use our expertise to improve cancer policies. To do all this, we mobilise as many people as possible to join the fight against cancer.

In concrete terms, this means that an oncology patient who is followed up by the hospital's oncologists is informed about the operation and possibilities of Fight Against Cancer. Every year, all kinds of initiatives are launched together with Fight Against Cancer.

Kom op tegen Kanker also provides some care volunteers who offer a listening ear and support at our hospital's day hospital.

For whom?

Persons with cancer.

Click here for more information on the initiatives.

Lymphoma Cancer Association Flanders vzw (LVV for short) is a patient organisation for and founded by (ex-)lymphoma patients. LVV is active throughout Flanders and focuses on young and old. LVV can therefore rely on volunteers who have had the disease themselves or have experienced it closely. LVV has no staff and is therefore entirely run by volunteers who put their heart and soul into helping all fellow sufferers.

Melanoompunt vzw wants to be a beacon for all Belgian melanoma patients and their loved ones. Melanoompunt vzw provides understandable, accurate and up-to-date information on the disease, the course of the disease, the treatment options, the care and the specifically Belgian support options. Furthermore, some patients and family members need contact with fellow sufferers so that they can help each other to fight the disease. With a warm team of volunteers, Melanoompunt vzw tries to meet each of these needs.

What.

The MS League Flanders aims to give MS meaning in life, to help all people with MS and those around them understand and cope with their condition, to support them individually and as a group, and to represent their interests so that people with MS can live a human and quality life just like everyone else.

Patients can make an appointment with someone from the MS League at our hospital.

For whom.

Persons with multiple sclerosis.

Neovida is a support group for people whose bladder has been or will be removed as a result of bladder cancer. The association offers support from the moment they are diagnosed with bladder cancer. They promote contact between fellow sufferers by organising informative and relaxing activities, both digitally and in real life.

PROLONG VZW is an initiative by and for people with lung or lung cancer and their loved ones. It encourages contact between fellow sufferers by organising a variety of activities.

The purpose and commitment of Prostaatlijn vzw is to take the word prostate cancer out of the taboo and make people aware to get screened in time. They want to offer support to anyone who has questions about prostate cancer in order to share concerns and experiences.

What.

ReumaNet vzw unites Flemish patient associations that raise awareness of rheumatic disorders. ReumaNet strives for regulations that make life easier for the thousands of patients, that guarantee affordable and adequate care, that keep them active on the labour market and in education, that make leisure activities possible for them too.

For whom.

Persons with rheumatic diseases.

What.

REUMATOÏDE ARTRITIS LIGA vzw - RA Liga vzw is a patients' association. Together with healthcare providers and academics, they share information, knowledge and experience, making it easier for patients to take control of their own healthcare process and life.

For whom?

People with rheumatic diseases

What.

The non-profit organisation Scharnier derives its name from 'kidney' on the one hand and 'hinge' on the other. The word 'kidney' includes all our kidney patients: dialysis patients and transplanted patients. The word 'hinge' stands for connection, link. Dialysis itself is a link between the kidney patient and his environment. Dialysis is also the link between kidney patients and transplantation, hope for new life. For patients, the dialysis unit remains the home port where they and their families can always go.

The board consists of doctors, nurses and patients.

Operation

• (Two-) annual day trips, patient parties, weekends, trips abroad.
• Birthdays and anniversaries are highlighted.
• Small gifts during end-of-year celebrations, at Easter and St Nicholas.
• Annual pilgrimage to Lourdes-Oostakker.
• Annual 'round of Gentbrugge' ridden by patients on bed bikes.

For the family

A back and forth booklet in a Scharnier bag with an informative brochure.

Sponsorship actions

Sponsorship campaigns are organised regularly to make it possible to offer all these activities at a budget-friendly price. Biennial events include a chicken feast.

Horizon magazine

'Horizon' is a quarterly magazine published by the Federation of Belgian Kidney Insufficiency Societies. It contains interesting information and documentation on kidney disease and treatment, tailored to the kidney patient.You can request a new subscription or renew your annual subscription via vzw Scharnier.

• Persons who were victims of stroke or cerebral thrombosis.
• Also for their partners and any interested parties.

Contact details

Telephone: 09 226 84 60 or 0475 71 82 86 or 0498 25 06 88
E-mail: willy.devriesere@skynet.be or tania.sucaet@telenet.be

What.

Foundation Against Cancer plays an important role in three areas, completely independently and transparently:

• science
• supporting patients and their families
• detection and prevention

Specifically, an oncology patient who is followed up by the hospital's oncologists is informed about the functioning and possibilities of the foundation. Every year, all kinds of initiatives are launched together with the foundation.

For whom?

Persons with cancer.

What to do.

Stoma-Ilco aims to assist ostomy patients primarily to help them resume their normal lives. If possible, they try to provide assistance even before surgery. They want to achieve this by providing information on ostomy care and by offering social and psychological counselling.

Specifically, an ostomy patient who is followed up by the hospital's abdominal surgeons is informed about the relevant patient organisation. Information leaflets of the patient association are available.

For whom?

Persons with an ostomy(ostomy rupture and ostomy repair).

What.

Trefpunt Zelfhulp vzw is a support and expertise centre for self-help groups in Flanders. You will find an overview of all patient associations and self-help groups.

For whom?

For anyone looking for a patients' association or self-help group.

What to do.

Together with our members and volunteers, the league ensures that people with parkinson's and those around them have every opportunity to live a dignified and quality life. We support each other with information, tips, experiences and good conversation.

For whom?

People with parkinson's disease.

What.

A care massage is a gentle, safe massage adapted to the needs of people with cancer or another serious illness. This relaxation massage can be applied at all stages of the disease process (during treatment, in recovery or in a palliative setting). Health complaints can be relieved naturally and pleasantly by healthcare massage.

The IKG has a collaboration with vzw zorgmassage. Oncology patients have the opportunity to receive care massage during their admission.

For whom?

Persons with cancer.

Click here for more information on care massage.