Patient and support groups
Patient organisations and support groups can provide invaluable information and support for you and your child. They can be a really useful point of contact for discussing issues affecting you and your child, and can provide a chance to meet others going through the same issues.
We have listed a selection below, according to country. Country codes apply for all telephone numbers.
Association Libre d’Information sur Croissance des Enfants "Silver Russell"
30, rue du Brocsous, 1325 Chaumont, Gistoux Belgium
Tel: 0479 25 81 41 for Belgium
Tel: +32 479 25 81 41 for France and Quebec
"Alice" helps families of children with Silver Russell disease.
69 Rue des Ebavous, TERRACE 38660, France
The Prader-Willi France association was established in 1996 to educate families and professionals about Prader-Willi and help improve the lives of people with Prader-Willi. The association has nearly 700 children and adults with the syndrome.
Association of Parents of Children with Growth Problems.
Association supporting children, families and friends suffering from Silver Russell or born small for their gestational age (SGA).
A federal Association of short stature people and their families.
Prader Willi Syndrom Vereinigung
Mühlenstr. 16, 29221 Celle, Germany
Tel: 0 51 41/3 74 73 27
Prader-Willi Syndrome Association Germany eV., supporting people with Prader Willi syndrome.
Foundation Child and Growth is the national center of expertise in the area of growth and development in children. As a foundation, they pursue the following objectives: promoting research into the causes of growth and development in children, evaluating existing and new treatment methods and advising patients and physicians. Thus, the foundation focuses on three main tasks: 1. Scientific research 2. The assessment and recording of growth hormone treatment in children and 3. The sharing of information to stakeholders.
Belangenvereniging Of Little People
BVKM, PO Box 3152, 2130 KD HOOFDDORP, Netherlands
The Belangenvereniging aims to represent the collective and individual interests of persons who have growth disorders.
The NVGG is a national patient organisation for children and adults treated with growth hormone.
The Turner Netherlands association supports its members with mutual contact, information and advocacy. Contact with fellow sufferers themselves is particularly important in a variety of issues. It also has useful information for those who have to deal with Turner Syndrome.
The Association's task is to provide information on Prader-Williamson and Angelman syndrome to parents, but also provide information to physicians and other care providers. Promoting parent-parent contact is another important goal, as well as the promotion of (medical) research into both syndromes.
The fundamental objective of the Spanish COLLAGE Prader Willi Syndrome Association is to protect and support, with educational provision and social integration of people diagnosed with Prader - Willi syndrome and their families, throughout the national territory.
PWS Association in Sweden aims to bring together people with Prader-Willi syndrome, their families and relatives, as well as staff at home, schools, kindergartens and various medical facilities.
The Child Growth Foundation is the charity that cares throughout life for the children who do not grow, or grow too much, and is also the umbrella organisation for the following support groups.
The Restricted Growth Association (RGA) is a registered charity (No 261647) that provides information and support to people of restricted growth and their families. They have a membership comprised of full members, their families and friends, and medical professionals with an interest in restricted growth.
Use the links below to find out more about:
- Symptoms and types of growth disorders
- When to see your doctor and how to get diagnosed
- How to treat growth disorders
- How can we live with it - information and help with supporting your child, with stories from real life patients and a section on needle fear.