Our Partners

This website is an initiative of the Belgian Society for Pediatric Endocrinology and Diabetes in collaboration with Pivotal Patient Journey. The final result came after consultation with various partners:

Patient Organisations

Turnerkontakt

Turnerkontakt is the Flemish organisation for patients and families affected by Turner’s syndrome. We provide information, organise meetings and support patients and families

our leaflet :folder turnerkontakt

PRADER WILLI VLAANDEREN

Created in 1987, our association

  • supports parents of patients with prader willi syndrome by
    • inviting professional guest speakers on contact days
    • organizing practical work shops
    • provide information by newsletters; online and by mail
    • organizing family days
  • representation of patients at health authorities, health care workers and hospitals to
    • improve follow up care, recognition, health and psychosocial care for Prader Willi patients
    • stay connected with other Prader Willi syndrome associations and organisations for rare diseases
    • participate at relevant meetings and congresses
  • Aims to improve knowledge on Prader willi syndrome in the general public

DIABETES LIGA

In Flanders, about 500.000 persons have diabetes (type 1 or 2) and every 17 minutes, some hears this live long diagnosis. The number of people with diabetes increases alarmingly.
Therefore, the diabetes liga informs, connects and mobilizes everyone confronted with diabetes. Together with people with diabetes, their environment, the health care workers, our members and volunteers, we aim as an independent organisation for a higher quality of life for people with diabetes.
We also provide informative brochures, like this brochure for taking care of children with diabetes : mijn kind heeft diabetes :mijn kind heeft diabetes

We have a specific groups for children and their parents : DIAKIDS

FOLDER DIAKIDS

HIPPO AND FRIENDS

A world without diabetes !

type  diabetes is a chronic auto immune disease that distroys de insulin producing cells in the pancreas. About 50000 Belgians are affected by diabetes type 1 and require daily insuline by multiple injections given by a pen or pump. Remarkably,  diabetes type 1 is diagnosed at an ever younger age.

Hippo and friends type 1 diabetes fund and vzw supports basic research about the cause, disease progression and new treatments for prevention or treatment of diabetes type 1. Also, sensibilisation is extremely important. There are still many misunderstandings about diabetes type 1 we try ro clarify. The improvement of the quality of life of patients with diabetes type 1 is a high priority we support by educational sport projects like diaT1op

you tube channel

ASSOCIATION DE DIABÈTE

Since 1942, our Association informs and guides persons with diabetes type 1 and type 2, at all ages, in the management and follow up of their disease. L’Association du Diabète unites persons with diabetes and health care workers. Together, we contribute to change the image of diabetes, to defend interests of diabetes patients and organise education on actual scientific information.

Our objectives :

  • Offer actual and scientific validated information to patients with diabetes, their family and health care workers
  • Stimulate prevention and early diagnosis of the disease
  • Improve medical care and reduce complications in persons with diabetes
  • Represent persons with diabetes with the health authorities
  • Support basic and clinical research

ASSOCIATION LUXEMBOURGEOISE DU DIABÈTE

ALD is an open association for everyone affected by diabetes.

Since 2003 the project ‘Maison du Diabète’ working with a convention from the Ministry of Health offers :

  • a place for listening and personal welcome
  • information and documentation
  • an open environment for persons with diabetes, their family, professionals, and health professionals in need for information about diabetes
  • social activities and leisure

XLH BELGIUM -ASSOCIATION OF PEOPLE WITH HYPOPHOSPHATEMIC RICKETS

Our association is called XLH Belgium, and aims to contribute to the well-being of people with XLH and their relatives. It pursues the following actions:

  • Gathering information and explanations about XLH, the treatments and therapies recommended, and all the available means of help.
  • Communicating and sharing this information and explanations with people with the disease
  • Form a national and international support network
  • Representing patients and their families to medical, political, social security and other authorities

PATIËNTENVERENIGING NET & MEN KANKER VZW

Patiëntenvereniging NET & MEN Kanker vzw supports patients and families dealing with Neuro-Endocrine Tumors (NET) and Multiple Endocrine Neoplasia (MEN) by uniting families online and on meetings. We aim to increase knowledge to help patients and families to ask the right questions and make informed decisions.

BOKS : BELGISCHE ORGANISATIE VOOR KINDEREN EN VOLWASSENEN MET EEN STOFWISSELINGSZIEKTE VZW

BOKS is an organisation for all metabolic disease and provides information and support to increase quality of life of all persons suffering from a metabolic disease. This is achieved by

Advocacy

sensibilisation and information

support of families

contact with other patients

La LUSS

La Luss is the Walloon federation of patient associations and their relatives, the spokesperson for all users of the health services. La LUss aims for quality health care for all and values the participation of its users in health care politics

Solidarité Turner

Solidarité Turner is the French speaking organisation for patients and families affected by Turner’s syndrome. We provide information, organise meetings and support patients and families

LEVEN MET ACROMEGALIE

This Flemish organisation started in 2021 in order to provide correct information and support for families confronted with acromegalia

Bijniervereniging NVACP

NVACP is an association for persons with adrenal diseases and their family.

the association wants to

inform patients and families and support them by providing lectures and contact with other patients and families

recognition of the European emergency cards

to aim for availability of international available medication

centralise information on centra of expertise

 

Professional organisations:

European Society for Pediatric Endocrinology

Our mission is to advance excellence in paediatric endocrinology and diabetes by promoting research, education and medical practice to the benefit of child and adolescent health throughout the world

The Belgian Association for the Study of Obesity (BASO)

The Belgian Association for the Study of Obesity (BASO) is a member of EASO and was founded in 1988 to promote scientific research on obesity. In 2002 BASO published its first consensus on assessment and treatment of overweight and obesity as a guideline for general practitioners and specialists.

BASO wants to promote interdisciplinary cooperation in the treatment of obesity and encourages health professionals  and scientists of different disciplines to become a member of BASO.

BASO aims to facilitate communication between individuals and organisations and encourages every initiative to counter the obesity epidemic.

International Society for pediatric and Adolescent Diabetes

The International Society for Pediatric and Adolescent Diabetes (ISPAD) is a professional organization whose aims are to promote clinical and basic science, research, education and advocacy in children, adolescents and young adults with diabetes. The strength of ISPAD lies in the scientific and clinical expertise in childhood and adolescent diabetes of its members. ISPAD is the only international society focusing specifically on all types of childhood diabetes.

vzw VDKA Vlaamse diabetescentra voor kinderen en adolescenten

Vzw VDKA  units the Vlaamse diabetescentra voor kinderen en adolescenten, working with a convention with the RIZIV.

Each recognized center treating children and adolescents with diabetes, consists of a multidisciplinary team with a paediatrician (specialized in diabetes), nurses diabetes educators, dieticians educators, psychologists, social workers and administrative assistents.

The purpose op the organisation is to improve multidisciplinary diabetescare for children and adolescents, improve communication between teams and team members, perform multicentric scientific research in all aspects of pediatric diabetes, represent the different centers with other organisations and health care authorities and to promote knowledge about diabetes in children and adolescents within the health care system by organizing educational activities.

Belgische vereniging voor Kindergeneeskunde/Société Belge de Pédiatrie

The organisation has as a goal to improve the health of the children, to ditribute scientific information to doctors and the broad public, to improve scientific research in pediatrics. As a scientific association, it represents all doctors and health care workers involved in children’s  health.

European Reference Network on Rare Endocrine Conditions

The European Reference Network on rare endocrine conditions (Endo-ERN) aims to improve access to high-quality healthcare for patients with hormonal disorders. Endocrine conditions are often complex and require a long period of care due to chronic disease without being life-threatening. Therefore, endocrine care requires equal distribution of paediatric and adult care. Endo-ERN aims to provide this care for patients throughout their entire lives and to reduce and ultimately abolish inequalities in care for patients with rare endocrine disorders in Europe, through facilitating knowledge sharing and facilitating related healthcare and research

Professional expertise:

Contact a specialist

This website is not intended to provide advice or a diagnosis. This website is only intended to provide information. Do you have questions? Talk to your doctor or contact a specialist