The aim of this website is to provide you with as much information as possible, so that you can perhaps get some comfort that others have experienced similar issues, and importantly get help to tackle them. If you are having difficulty with getting support for you or your child (and family), then we hope to provide points of contact.
Our contact details:
Facebook Support Page
Everything is confidential and will be treated with respect. If we don’t have an answer, we will try and point you in the right direction.
We have been through hoops and over hurdles, many times falling over with the huge pressures that parenting a child with differences brings, but importantly, we have dusted ourselves down, picked ourselves up and found other ways to overcome the barriers.
Genetic Disorders UK: Our mission is to be the leading source of information and support for both those affected by a genetic disorder, and the charities and patient groups that support them, by bringing together everyone’s combined experience in a place it can be shared. 0800 987 8987
Contact a Family is a national charity for families with disabled children.
We provide information, advice and support. We bring families together so they can support each other. We campaign to improve their circumstances, and for their right to be included and equal in society. Free Helpline is 0808 808 3555
GARD: GARD is a program of the National Center for Advancing Translational Sciences (NCATS) to provide access to current, reliable, and easy to understand information about rare or genetic diseases in English or Spanish. Based in the USA.
International number: 301-251-4925
If you would like help from our specialist in FHS, we can write a letter of support to help you with Education for your child. Please email us in the first instance with some details. If you require help with your GP, we would be happy to contact them via email/or by letter, with a letter of support, based on our knowledge of FHS and associated difficulties.
Floating Harbor Syndrome Global Support Forum is a source for people to discuss information, experiences and offer help for others.
Membership approval is usually attended to weekly, so please email if you don’t hear back within 7 days, to firstname.lastname@example.org