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From Peter Limbrick, Interconnections, April 7th, 2018

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ISEI: Conference in Sydney, Australia in June 2019. Abstract welcome

Theme: Research to Practice in Early Intervention: An International Perspective

ISEI is a professional society providing a framework for communicating advances and promoting international networks in the field of early intervention. Are you a member?

More: http://depts.washington.edu/isei/

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Prevalence of undiagnosed genetic conditions in clients whose behaviour challenges services supporting them. Can you help?

Steve Hendy writes: Following a combination of clinical cases and a literature review we are keen on doing some work of the prevalence of undiagnosed genetic conditions in our population of clients whose behaviour challenges the services supporting them.

The couple of clinical cases involved ‘accidental’ diagnosis of genetic disorders. These diagnoses had very significant and positive benefits for formulation and treatment for both individuals.

Our literature review has not ‘turned’ up anything specific to this question.

It might be I have missed the relevant literature.

Is anyone looking at this or a similar question and or able to point me in the direction of relevant literature?

Thank you for your help

Steve

Steve Hendy

Consultant Clinical Psychologist

(HCPC PYL06196)

Community Learning Disabilities Team

Stalbridge Road Clinic

Crewe - UK

CW2 7LP

Steve Hendy <This email address is being protected from spambots. You need JavaScript enabled to view it.>

Tel: 01270 656335

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Imagine ID - research project looking at how a child’s DNA affects development and learning disorders

Imagine ID is a research project funded by the Medical Research Council looking at how a child’s DNA affects development, particularly in relation to learning disorders.

The study want to answer a question parents often ask when their child receives a genetic condition: what does this mean for my child? A genetic diagnosis is just the beginning…

We want to understand the challenges families face, help improve care and find better treatments.

We need your help. Can your family take part?

If your child is aged 4 or over and has intellectual disability due to a genetic cause then yes you can! After you complete an online questionnaire, you will receive a personalised summary report of your child’s strengths and difficulties. In addition, you will receive a copy of our children’s book Avery. Please join our research project - contact us: This email address is being protected from spambots. You need JavaScript enabled to view it.

Helping children understand genetic illness

“Most days I’m like the other birds. Other days though, I am not. And I have to be very brave.”

Avery, a new children’s book produced through a collaboration between the University of Cambridge and Anglia Ruskin University, tells the story of a young bird who is born to be different from the other birds.

Being born with a genetic disease can be confusing and frightening, not only for a child, but also their parents and siblings. This book was created to help parents start what is often a difficult conversation with their child.

Avery is available to order online: http://bit.ly/2xnvwjH

Visit: www.imagine-id.org

Contact us: email This email address is being protected from spambots. You need JavaScript enabled to view it.

Phone 01223 254631 -UK