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General Support

General Support

How we can help

Advice and signposting

Coreen, our Support Development Officer, offers telephone support from Monday to Friday 9am to 5pm. If she cannot answer a question she will do her best to find an answer, or signpost you to someone that can. You can telephone Coreen (pictured right) on 01382 204446 or by email.

Information and resources

We have various resources available for you, from factsheets that have been approved by NHS healthcare professionals, educational talks from our conferences and events, to hospital packs for children which we can send out on request. Please see our Information and Resources page to access these.

You can also sign up to receive our regular electronic newsletter, and if you become a member you will also receive updates via hard copy newsletter.

Peer support

We offer peer support through our events which we run across the country for various age groups. We have a Kids Club for 0 to 10 year olds, Cool Bones for 11 to 15 year olds and VOICE for 16 to 30 years olds. We also run our annual family conference and various Patient Days throughout the year. We can link you up to various closed Facebook groups and put you in touch with families and individuals with similar experiences, or we can just be there as an ear to listen.

Support groups

We currently have various support groups throughout the country. Some meet more regularly than others, and they all have closed Facebook groups. Please get in touch with us and we can add you to these groups.  The current groups are:

  • Scotland

  • Wales

  • Northern Ireland

  • The Republic of Ireland

  • North West of England

  • North East of England

  • Birmingham

Newly diagnosed

Have you or a family member recently received a new diagnosis of Osteogenesis Imperfecta (OI)? We understand this can be a difficult and stressful time, and the information you have received may be new and confusing. We are here to help you make sense of it all.

For parents, a child’s diagnosis is often a traumatic and lonely time for various reasons – especially for families where there is no history of OI. Some of you may even have fallen under suspicion of abuse, having to prove to relatives, friends or social workers that broken bones are a medical symptom, not a sign of violence.

At this stage, you want information and reassurance on what lies ahead, and you need plenty of support from others who understand exactly how it feels.

We aim to provide support for the whole family and you can contact our Support Development Officer once you have received a confirmed diagnosis.

Please watch our film to hear experiences of some parents who have children with OI.

NB. Any views expressed on this website will be general in nature, do not constitute medical advice and will not be a substitute for taking advice from your usual medical practitioners.