Information for Patients (Adult Rare Bone Disease Network)
How can I get my case discussed by the Network?
Which types of NHS patients does the network cover?
The Adult Rare Bone Disease network brings together experts to discuss the diagnosis of adults who may have a rare bone disease or the treatment of adults with a diagnosed rare bone disease.
Rare bone diseases are defined as conditions that are diagnosed in less than 1 in 2000 people that affect the skeleton. They can be grouped into conditions that cause:
- Bones to break more easily
- Bones change shape or deform
- Bones grow abnormally
- Bones that are too dense
- Extra bones to grow.
How can my details be discussed?
The network only accepts referrals from NHS teams. If you feel there may be a benefit of your case being discussed by the network, you need to discuss this with your medical team. They will be able to advise you if you need to be referred to the network or not. The network is relatively new and your team may not know about it. They can find out more by emailing admin@brittlebone.org or visiting the information for clinicans page.
As a network we cannot respond to individual queries from patients and families and recommend you contact your patient group for more information as listed on the Adult Rare Bone Disease page. If you don’t have a specific patient group please contact Metabolic Support UK
If my case is discussed, how will I know?
If your case is taken to the network, your medical team will ask for your verbal permission to discuss your details as part of your care, for training and education of healthcare professionals.
If my case is discussed, how will my confidentiality be maintained?
Your personal details will not be shared and your confidentiality will be maintained during discussions.
If my case is discussed, how will I know what happened?
If your case is discussed, your medical team will be updating you with you the recommendations from the network. These are only recommendations and the final decision rests with your local medical team.
Q&A
Is it only Consultants who can refer? Can my case be referred if I don’t have a “medical team” (ie via my GP/Physio/OT)
At this stage we are only accepting referrals from hospital doctors as they will have the necessary information to discuss your case at the network
Is it only “bone” related queries which can be discussed – for example could my Ophthalmologist or Cardiologist refer a case?
So long as the problem you have is because or related to your rare bone disease, we welcome referrals from other hospital specialities.
