Patient associations

Below you can see a list of patient associations and self-help groups that cooperate with our hospitals. Cohorts in these groups can be a tremendous support for patients (or those close to the patient). Exchanging all sorts of tips and experiences helps you cope better with a certain illness or condition.

If you do not find a relevant self-help group or patient association, you may ask for advice from the non-profit Meeting Point Self Help (a support and expertise centre for self-help groups in Flanders).

What is it?

AHOSA is a non-profit organisation that promotes the wider societal inclusion of people who are hard-of-hearing or who are deaf and communicate in spoken language. AHOSA empowers persons who are deaf and hard-of-hearing and raises awareness among the hearing population about this invisible limitation. Based on the principle of equality, AHOSA creates opportunities for hard-of-hearing persons or deaf persons to manage their own situation as an independent, autonomous citizen and to participate fully in our society.

For whom?

Deaf or hard-of-hearing persons

What is it?

Within the Flemish Community, we organise and support (young onset) dementia family groups where family members and carers of people with (young onset) dementia can exchange information, experiences and mutual support. We also encourage, support and/or organise other activities to support those involved. Additionally, we raise awareness of the possibilities and limitations around dementia. Finally, we promote scientific research into dementia and into support for the carers and family of persons with dementia.

In specific terms, this means that a person with dementia who is being looked after by the neurologists or geriatric specialists in the hospital, and their carer, are informed about the Alzheimer’s League, how it works and what it offers. Information leaflets about the patient association are available.

For whom?

Persons with dementia and their family.

What is it?

Apnoea Association Flanders (non-profit organisation) is an organisation for apnoea patients in Flanders that aims to share information and experiences.

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

• they receive the three-monthly magazine ‘ApneuKrant’ as well as the ‘ApneuMagazine Nederland’, the comprehensive magazine of the Dutch Apnoea Association.
• they participate, free of charge, in patient meet-ups and webinars that feature speakers about subjects that relate to sleep apnoea.
• they have access to the information on the website that is limited to members and friends, such as the digital version of the ApneuKrant and ApneuMagazine.
• they can post responses to message on the website where this function is available.

In specific terms, this means that a person with sleep apnoea who is being looked after by the pulmonologist or neurologist in the hospital is informed about the relevant patient organisation. Information leaflets about the patient association are available.

For whom?

Persons with respiratory sleeping problems.

What is it?

The Back on Track Fund helps cancer patients take action to regain control of their own lives!

After the shock of a cancer diagnosis and going through difficult cancer treatment, you suddenly have to pick up the threads of ordinary life again. Although this transition, from active treatment to a life after diagnosis, is very important for the long-term prognosis of the disease, you are suddenly on your own.

The people close to the patient can find themselves in a similar vacuum. Their lives too have been played out in existing care facilities and a social safety net for a considerable length of time, which suddenly disappears after the sometimes lengthy period of treatment.

The Back on Track Fund aims to fill this gap. In this way, we want to create sustainable support and a constant value in the continuity of care for current and former cancer patients and their loved ones.

Who is it for?

Persons with and after cancer.

Click here for more information about the initiatives.

What is it?

The Braille League:

• provides life-long support for blind and partially sighted people (if they so wish) to assist in their inclusion in society.
• offers their expertise to politicians, public figures in social and cultural life and the public at large who promote the inclusion of blind and partially sighted people at all levels of society.
• supports technological, operational, and scientific or ophthalmological research.

It does so for the whole of Belgium!

For whom?

Blind or partially sighted people.

The Digestive Contact Group would like to help everyone who has a diagnosis of stomach or oesophageal cancer, as well as their partners and family members — their peers — by sharing their experiences with this disease. The Digestive Contact Group also organises informational gatherings with experts and supports the general interests of the friends and family of those who have a cancer diagnosis.

The COPD non-profit organisation is for people who have chronic obstructive pulmonary disease and would like to provide patients and their family members with easy-to-understand and easy-to-remember information about their illness and its effects. Regular informational evening sessions, walks and appointment days are organised. They are listed and publicised in detail on the website.

What is it?

The objective of the association is to promote the physical, mental and social well-being of patients who have coeliac disease and/or dermatitis herpetiformis and related conditions. It has the following objectives:

• Establishing contact between coeliac disease patients or parents of coeliac patients through a three-monthly magazine, regional meet-ups, an annual member day with additional activities and a discussion forum;
• Publicising gluten-free products and promoting their distribution;
• Creating and publishing recipes for gluten-free cooking and baking;
• Publishing useful addresses of e.g. health food stores, hospitality businesses and specialised dietitians;
• Raising awareness of the concepts of ‘coeliac disease’ and ‘gluten-free diet’;
• Publishing medical and dietary information relating to coeliac disease and gluten-free diet;
• Representing the interests of coeliac patients to the government and health insurers.

In specific terms, this means that a person with coeliac disease who is being looked after by the hospital’s gastroenterologists is informed about the relevant patient organisation. Information leaflets about the patient association are available.

For whom?

Persons with gluten intolerance or coeliac disease.

What is it?

Deinze Stroke Care is a patient group that offers help and advice and where the patient and their carers are central to all they do. Participation provides access to expert advice, a listening ear, social support, relaxation and enjoyable company and just an opportunity to go out. We meet up every two months in the LDC De Bosrank in Deinze. This groups is affiliated with the Belgian Stroke Council (www.belgianstrokecouncil.be).

In specific terms, this means that a CVA patient being looked after by the hospital’s neurologists is informed about the relevant patient organisation. Information leaflets about the patient association are available.

For whom?

Persons who have had a stroke (CVA or cerebrovascular accident).

Contact details

Miriam Mathijs
Tel: +32 (0)476 33 70 65
e-mail: myriam.mathys@telenet.be

Every seventeen minutes, somebody is diagnosed with diabetes.

One in three people have diabetes but do not know it.

Diabetes affects one in ten Belgians. By 2040, that will be one in eight.

That is why the Diabetes League informs, connects and mobilises everybody who is affected by this condition. We are independent, and we want to harness the energy of all of those who have diabetes, their community, caregivers, our members and the volunteers. Together, we’re striving toward a better life with diabetes and toward a world without diabetes.

A dynamic team of twenty-three enthusiastic staff members, more than 390 active volunteers and 16,000 members support people with diabetes and their community.

What is it?

The Flanders Centre of Expertise on Dementia and the regional centres of expertise on dementia want to offer people with dementia and the people around them a point of contact, when required, where questions are acknowledged, answered or referred to the correct contact against a background of expertise. They want to provide people with dementia and their carers with opportunities for exchanging information and experiences, or facilitate these.

For whom?

Persons with dementia.

The Brain Injury League is a patient organisation that connects individuals and organisations working to improve the quality of life for people living with a non-congenital brain injury and those around them. The League offers direct support to persons who have a non-congenital brain injury and their carers through the Brain Injury Line.

The Hodgkin's Disease and Non-Hodgkin's Disease non-profit organisation is a lymphoma cancer association whose main objective is to support patients with Hodgkin's and Non-Hodgkin's ‘lymph node cancer' in their experience as a cancer patient. Those who have experienced the same condition understand you better. That is the strength of our contact among patients, and we would like to share that with you.

Patient empowerment happens on diverse fronts: patient contact with hands-on experts, informational sessions and organising symposiums with physicians at regular intervals. The association defends their members' interests by participating in various discussions within the pharmaceutical industry and in administrative discussions that are held at the regional and federal level. The steering members/contact persons have been trained by diverse umbrella organisations, including the Fight Against Cancer.

What is it?

The Contact Elders non-profit organisation is a volunteer organisation what seeks to address loneliness in Ghent. For more than 40 years, this organisation has inspired people to reach out to the elderly who feel isolated.

Regular house visits are a pillar of this programme. A regular volunteer visits an assigned elderly person and builds a friendship with that individual. Both experience how enriching it is to engage with each other.

Occasionally, the group may organise a gathering or field trip.

For whom?

Seniors who are alone.

What is it?

Our dream? A world without cancer. Until then, we avoid and fight cancer and alleviate its burden. In addition, we employ our expertise to achieve better cancer-related policies. To achieve all of this, we mobilise as many people as possible to join our fight against cancer.

In specific terms, this means that a cancer patient who is being looked after by the hospital’s oncologists is informed about The Fight Against Cancer initiative, how it works and what it offers. Together with The Fight Against Cancer, a variety of initiatives are started each year.

The Fight Against Cancer has volunteer caregivers who lend a listening ear and who offer support at our hospital’s day hospital.

For whom?

Persons with cancer.

Click here for more information about the initiatives.

Flanders Lymphoma Cancer Association (abbreviated: LVV) is a patient organisation for and founded by current and former lymphoma cancer patients. LVV, which is active throughout Flanders, is for young and old alike. So, LVV can call on volunteers who have either had the disease or have experienced it up close. LVV does not have any employees, so it is entirely staffed by volunteers who put their heart and soul into helping their fellow sufferers.

Melanoma Point is a non-profit that would like to serve as a beacon for all Belgium-based melanoma patients and their loved ones. Melanoma Point provides accurate, up-to-date and easily comprehensible information on the disease, its course, treatment options, care and the support options specific to Belgium. Furthermore, some patients and caregivers need contact with peers so that they can help each other to keep fighting the disease. With a caring team of volunteers, Melanoompunt tries to meet each of these needs.

What is it?

The Flemish MS League wants to give meaning to MS in life, help all people with MS and their loved ones gain insight in and deal with their condition, support them as individuals and as a group and represent their interests, so that people with MS can lead a human and good quality life, just like everybody else.

Patients can make an appointment in our hospital with a representative of the MS League.

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 as soon as bladder cancer has been diagnosed. They promote peer contact by organising informative and relaxing activities, both online and in real life.

PROLONG is an initiative by and for people who have lung cancer or malignant pleural mesothelioma and their loved ones. It encourages contact between fellow sufferers by organising a variety of activities.

Prostate Line is committed to removing the taboo around speaking about ‘prostate cancer’ and to raising people’s awareness about getting screened in time. They want to offer their support and share their experiences with all who have questions and concerns about prostate cancer.

What is it?

ReumaNet is a non-profit group of Flemish patient associations that brings attention to rheumatological conditions. ReumaNet advocates for regulations that make life easier for thousands of patients and that guarantee affordable and adequate care, which in turn keeps patients active in the labour market and in education. It also advocates for regulations that enable the pursuit of hobbies and leisure activities.

For whom?

Persons with rheumatological conditions.

What is it?

RHEUMATOID ARTHRITIS LEAGUE, non-profit organisation - The RA League is a patient association. Together with care providers and academics, they share information, knowledge and experience that make it easier for patients to take control of their own healthcare process and lives.

For whom?

Persons with a rheumatological condition

What is it?

The non-profit Scharnier gets its name from the Dutch word ‘scharnier’, which means 'hinge' but also includes the word 'kidney'. The word 'kidney' covers all our kidney patients: dialysis patients and transplant patients. The word ‘hinge’ stands for connection, a pivotal point. The dialysis is in itself a link between the kidney patient and the surroundings. Dialysis is also a link between kidney patients and transplants, hope for new life. The dialysis department remains the home base for patients, where they can always seek advice and guidance together with their families.

The board consists of physicians, nurses and patients.

How it works

• (Bi-)annual day trips, patient parties, weekends, trips abroad.
• Birthdays and anniversaries are celebrated.
• A small gift during the end-of-year celebrations, at Easter and St Nicholas.
• Annual pilgrimage to Lourdes-Oostakker.
• Annual ‘tour of Ghent-Bruges' by the patients on bed bikes.

For the family

A back-and-forth booklet in a hinge pouch with an informative leaflet.

Sponsoring events

Sponsorship promotions are launched regularly; these make it possible to offer all these activities at low cost. A chicken festival is organised every two years.

Website

Look at the website of the Non-profit Scharnier

Horizon magazine

'Horizon' is a magazine issued every three months by the Federation of Belgian Associations for Renal Failure. It contains interesting information and documentation about renal conditions and treatment, written with the kidney patient in mind.

You can subscribe or renew your subscription via the non-profit Scharnier.

• Persons who have suffered a stroke or cerebral thrombosis.
• Also for their partners and other interested parties.

Contact details

Telephone: +32 (0)9 226 84 60 or +32 (0)475 71 82 86 or +32 (0)498 25 06 88
E-mail: willy.devriesere@skynet.be or tania.sucaet@telenet.be

What is it?

The Foundation against Cancer plays an important role in three areas, in a fully independent and transparent manner:

• the science
• support of patients and their families
• detection and prevention

In specific terms, this means that a cancer patient who is being looked after by the hospital’s oncologists is informed about the Foundation against Cancer, how it works and what it offers. Together with the foundation, a variety of initiatives are started each year.

For whom?

Persons with cancer.

What is it?

First and foremost, Ostomy Ilco wants to help ostomy patients get back to their ordinary lives. If possible, they try to provide assistance before the surgery. They want to realise this by providing information about ostomy care and by providing social and psychological support.

In specific terms, this means that an ostomy patient who is being looked after by the hospital’s abdominal surgeons is informed about the relevant patient organisation. Information leaflets about the patient association are available.

For whom?

Persons with an ostomy (parastomal hernia and parastomal hernia repair).

What is it?

Meeting Point Self Help is a support and expertise centre for self-help groups in Flanders. You will find an overview of all the patient associations and self-help groups.

For whom?

For anyone who is searching for a patient association or self-help group.

What is it?

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?

Persons with Parkinson's.

What is it?

Massage therapy involves gentle, safe massage that is tailored to the needs of people who have cancer or another serious disease. This relaxing massage can be applied at every phase of the disease process (during treatment, recovery or in a palliative setting). massage therapy offers a natural and pleasant way to alleviate health issues.

IKG collaborates with the non-profit organisation for massage therapy. Cancer patients have the opportunity to receive massage therapy during their hospital stay.

For whom?

Persons with cancer.

Click here for more information about the massage therapy.