Useful information websites & links
Our family is made up of the families and friends of children born with 1p36 deletion syndrome.
1p36 deletion is a rare chromosone disorder that occurs in approx 1 in 5000 - 10000 births.
It is unlikely that families will come in to contact with another child with 1p36 del in their local community. Our online community helps us to keep in touch with each other and share experiences.
1p36 Deletion Support & Awareness (1p36 DSA) was founded in 2009 by
parents of children diagnosed with 1p36 Deletion Syndrome in hopes to
bring support to families and greater awareness to society regarding
Unique is a source of information and support to families and
individuals affected by any rare chromosome disorder and to the
professionals who work with them. The people from Unique are amazing and have been a priceless service to myself and my family in accepting Evie-Anne's medical condition, and helped put us in touch with other familys in the same situation.
Newlife gives practical support for disabled children throughout the UK, cares for the carers, funds medical research, gives grants for medical equipment thats the state do not provide, and creates awareness and campaigns for change.
Family Fund helps families with severely disabled or seriously
ill children and young people aged 17 and under to have choices and the
opportunity to enjoy ordinary life.
They give grants for things
that make life easier and more enjoyable for the disabled child, young
person and their family, such as washing machines, equipment, driving
lessons, computers and holidays.
They are not health care professionals. They are a group of parents who are
raising infants and children with feeding tubes. They are Super Tubie
Mommas and Daddies who want to share what we have learned along the way
while raising awareness of tube feeding.
Because there is little awareness of tube feeding, it is often misunderstood. Tube feeding is a last resort for
medically complicated children who are unable to eat or drink enough to
live and thrive. They want to raise positive awareness of this life
saving medical intervention.