This section contains information for professionals who provide care and support for people living with a rare growth condition.
Resources & Publications
We aim to support the healthcare profession in the diagnosis, management and treatment of patients who have growth related conditions.
The main rationale for the CGF is patient support to compliment the care and treatment provided by the health care profession. The main aspects of our patient care are:
- Helpline – One of our most valuable services is the support and information we can provide to patients and carers soon after they have received a diagnosis of a growth condition. We offer detailed and extensive telephone and email support and assist in answering the many questions that can arise after a medical consultation. We can help the carers to understand what the diagnosis means for them and from personal experience, guide on how to implement the treatment plan for the patient. Our helpline team is comprised of parents and carers who have detailed and personal experience of the conditions they cover
- Peer Support – The support, knowledge and empathy of other people in a similar situation can be tremendously valuable. The CGF facilitates a peer support network so that caregivers can have contact and learn from the experiences of others
- Social Media – The CGF hosts (and mediates) vibrant Facebook groups for the many growth conditions. This is a major route of information transfer for parents and carers
- Newsletter – The twice yearly CGF e-Newsletter provides updates from health professionals on recent developments and learnings, an exchange of patient experiences, a review of recent research and other valuable information. You can subscribe by completing the section on the right hand side of this page
- Convention – The annual convention provides a unique mix of interaction and talks from leading doctors and professors, networking, social interaction and the chance for children, youths and adults to meet and spend time with others with the same condition
Visit our DOWNLOAD to access a range of booklets and resources.
The CGF believes that correct measurement and recording of all the parameters associated with growth is essential to ensure the correct diagnosis and management of a patient. The CGF has been instrumental in developing many products and services including growth charts, height and length measures, head circumference tapes. Recommended products can be found at Harlow Printing
Download our CGF Measuring Guidelines
The value of patient support groups in undertaking associated research projects is increasing. The CGF is involved in defining research projects, assisting in the provision of cohorts of patients, membership of steering committees and occasional financing. Please visit our Research page for further information about the projects we are involved with.