Many people with OI feel isolated as a result of their condition and we try our best to help but we can’t always answer their questions and signposting is necessary. Below are some other specialist organisations that provide useful information.
EUPATI Toolbox on Medicines Research and Development. With the toolbox you can find an A-Z of medicines development
Disability Action Alliance (DAA)
For all the latest updates from the DAA here
Personal Independence Payment (PIP)
DLA is switching to PIP information on how this affects you can be found via the Handbook
Citizens Advice Bureau (CAB)
If you or your child has OI you may be able to claim benefits and tax credits. Your local CAB will be able to provide guidance on what benefits you are entitled to and how to apply. Click here for more information.
Department of Work and Pensions (DWP)
There have been major benefits changes put into place from 2013 so contact DWP to find out if you are eligible to apply. Click here for more information.
Touchbase is a monthly publication containing news about benefits, pensions, DWP services and relevant news from other government department and agencies. Click here for more information.
Benefits and Work
Benefits and Work offer information and help on how to navigate the benefits claim system. They offer advice on Benefit to Employment and Support Allowance, Disability Living Allowance and Personal Independence Payment. Find their website here.
Turn2Us is a free service that helps people in financial need to find sources of financial support such as charitable grants based on individual needs. Click here for more information.
The Motability Scheme helps people with disabilities to become more independent with the purchase of a car if you receive the higher rate mobility component of DLA or the enhanced rate mobility component of PIP. Click here for more information.
Blue Badge Scheme
The Blue Badge Scheme allows people with disabilities to enjoy a range of parking benefits when travelling as a driver or a passenger. Click here for more information.
Disabled Persons Railcard
If you have a disability that makes travelling by train difficult, you may be eligible for the Disabled Persons Railcard. This allows you to get discounts on your rail fares throughout Great Britain for yourself and a companion. Click here for more information.
Contact a Family
Contact a Family was established for families who have a child with a disability and those that work with them or are interested to find out more about their needs. They enable parents to get in contact with other families or organisations that can give them support. Click here for more information.
Carers Trust works to improve support, services and recognition for unpaid family carers. They aim to ensure that information, advice and practical support is available to all carers across the UK. Click here for more information.
The Yellow Card Scheme is vital in helping the MHRA monitor the safety of all healthcare products in the UK to ensure they are acceptably safe for patients and those that use them. Reports can be made for all medicines including vaccines, blood factors and immunoglobulins, herbal medicines and homeopathic remedies, and all medical devices available on the UK market. For more information and to visit their website click here
Click here for a list of insurance companies our members have used in the past.