Getting Advice

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:


Twitter: floatingharbor

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.

Toll-free: 1-888-205-2311
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



6 thoughts on “Getting Advice

  1. Hi Andrew. My son aged 20 has recently been diagnosed with FHS. When I read up on the characteristics it was like reading about him. I am still coming to terms with it so a support group would be welcome. I live in Hampshire. Tina


    • Hi Tina
      Thanks for the reply. Now you have received a formal diagnosis, have you been offered any further help or support ? We struggled initially to find help, but like you we researched ourselves, joined any groups we could find online, and tried to reach out to other families with FHS. This web site and forum has been the most useful.
      We are in Dorset, perhaps we could speak directly to swap ideas. We would be interested to know what you did about schooling, even without the diagnosis. Would you be happy to share ( privately), your contact details ? Maybe Admin can help out.


    • Hi Tina
      Would you be happy to swop contact details, so we can talk privately? We are in Dorset so neighbouring counties, perhaps we could meet sometime to exchange ideas. Would be interested to know what you did about school, we are coming up to transition to senior school. Thanks.


  2. Hi all
    Our 9 year daughter has just been diagnosed with FHS, having previously been told it was Global development delay.
    Can anyone offer any help or guidance, please. Any help groups in England ?
    Lastly, what do people do about school ? Mainstream ( with support) or special school ? Please feel free to e mail me direct.
    Thanks. Andrew.


    • We have an active Twitter account. Would you like us to copy your message including email address and publicise your message?
      handle = floatingharbor


      • Yes, please share where suitable. I would still be keen to see if there are any support groups in the uk, or sufficient interest to form one ?


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