Vaccination for COVID-19

Over the last year and a half many anxious parents around the world, have been asking why those who have Floating Harbor Syndrome (FHS) have not been classified for inclusion in a high priority group, within the vaccination programs relating to COVID-19.

The advice we have to date, is that all persons with a formal diagnosis should be vaccinated as a high priority case. At the time of writing this information applies to ages 12 upwards.

Pending further investigation in this category of neurodiversity and genetic complexity, individuals with FHS must be considered as having a higher risk of contracting serious side effects due to the virus and should be treated as such. Most individuals with FHS have Developmental Delays and the CDC supports the advice given: –

“Some people with developmental disabilities may have difficulties accessing information, understanding or practicing preventative measures, and communicating symptoms of illness”.

We strongly advise that all Health teams around the World acknowledge that FHS individuals are in urgent need of protection in this area because failure to provide vaccinations to them may have a detrimental effect on their quality of life.

What FHS individuals must endure to live life are unique within their classification and are not duplicated within any other groups, or anywhere else for that matter.

Action must be taken now.

Jeans for Genes Day 21 September 2018


Jeans for Genes Day is the annual fundraising campaign for Genetic Disorders UK, the national charity that supports individuals and families affected by a genetic disorder.

Monies raised on Jeans for Genes Day fund the work of the charity and provide grants to organisations for projects that aim to transform the lives of children with genetic disorders.

Supporting our network through