If you are a parent of a child who receives hormone replacement therapy then you may well be interested in the services we can offer you and your family.
We would like you to be involved.
Your child may have a pituitary endocrine disorder which, as he/she grows into adulthood, will need ongoing care. We find people appreciate the opportunity to make links with other patients and families, considering the common feeling of isolation experienced by most people associated with rare problems.
Support groups for children and families are active in QLD and NSW and we hope to establish groups in other states with the help of a dedicated family. NSW presently has a family who assists the Foundation by arranging support social gatherings in Sydney. A QLD family have offered telephone support to parents of newly diagnosed babies. Assistance like this certainly enhances what the Foundation can provide through volunteering.
Combined adult/paediatric education is being introduced within our pituitary awareness seminars. Occasionally with the help of dedicated doctors and nurses we are able to offer informal educational lectures at social gatherings.
APF members have exclusive access to our Contact Register where members have registered their interest to talk to others by phone or correspond by email. It provides the opportunity for members to share with other members, ask questions, gain support, and arrange to meet if they wish. A specific Paediatric Contact Register is available to parents and carers of children with pituitary conditions.
We hope to help children who are likely to require growth hormone in their adulthood to have an optimal transition through this stage of their lives, and are currently endeavouring to improve the probability of affordable access to GH medication in the future.
Eventually your child will need to learn to monitor and manage themselves independently, and may want to become a member of the APF themselves. In these ways the APF may be able to help you and your child in addition to the services you already receive through your health care provider.
Are you interested in helping us expand the Paediatric sector of our organisation?
Want some more information? Please email the national office.
To become a member please join on-line or download our membership form.