The UK Strategy aims to ensure no one gets left behind just because they have a rare disease. We want to put the patient’s needs first. To do this, we will bring together the talent, skills and professionalism of all relevant sectors.This will bring real, positive change in how we deal with rare diseases and how we help people with complex conditions (Quote from The UK Strategy for Rare Disease)
This sounds great news for people in the UK who have a rare disease or being diagnosed with a rare disease at last things are going to change for them and it states that the Strategy will bring real positive change in how they deal with rare diseases and how they will help people with complex conditions it also states states that all four countries in the United Kingdom will have their own Strategy to deal with patients with rare disease’s and how to help people with complex conditions.
It States that the strategy does not just focus on patient services. It also covers scientific research, which is important for improving our understanding , diagnosis and treatment of a rare disease. The UK has a vibrant life sciences sector, which means they could be at the forefront in the development of new technology that improves services and opportunities for people with rare diseases (quote from The Strategy For Rare Disease)
The UK there are many examples of excellence and world-class services for people with rare diseases. However they want to see further improvement across the whole patient journey:the patient’s experience from their first contact with the NHS through to reaching a diagnosis and onto managing their condition.
Northern Ireland like others have to publish their strategy on rare diseases and there diagnosis my concerns about this are is Northern Ireland Health Service ready to carry out a strategy on rare disease I will be very intre4sted to read this document when it is published I have many fears in regard to the Northern Ireland Strategy
The Cavan Tommy Hoey Trust sets up The Ultra Rare Disease,Disorders &Disabilities Foundation the Trust for a long time has felt it should build a rare disease foundation in Northern Ireland both Terry and Maureen Hoey the founders of the Cavan Tommy Hoey Trust felt that if they were going to get the message out about children and Ultra Rare Diseases they would have to build a trust that would meet the needs of the patients and the families They have worked hard on the Trust but they both felt they had to take it to the next stage
The Foundation has six directors they are Terence Hoey as President Maureen Hoey as treasurer David Allinson as Events Director Carla Close as Co Treasurer Godfery Brock-Gadd as Secretary and Ria Brock-Gadd as Assistant Secretary both Carla and David joined Terry and Maureen Hoey the grandparents of Cavan Tommy Hoey as Carla and Davids son jamie has also got CDLS and is nearly completely Disabled and has very complex needs and needs 24hr care both families have got together with Godfrey and Ria to build The Ultra Rare Disease,Disorders & Disabilities Foundation and they agreed to register it as a Private Limited Company and registered in Northern Ireland Company Number NI617725 they also agreed it should be registered as a charitable company and registered with HM Revenue & Customs in line with Paragraph 1 of Schedule 6 Finance Act 2010.
All the Directors of the foundation met to decide the way and the shape of the foundation as Terence Hoey and Maureen Hoey and Carla and David had both been touched with children who have a Rare Disease and an Ultra Rare Disease, the foundation has went along the lines of their experiences in how it affects both the patients and the families who has a child or an adult with a rare or an ultra rare disease and a child or an adult who has brain injury and is or a disability to enable the Foundation to be one of the world leaders in helping families and children with the effects of a Rare Disease as both the major Directors families have been touched and are living with a rare disease or an ultra rare disease,Disability,Complex Needs,Brain Injury,Learning Difficulties,and behavioural problems, the foundation knows the complex needs of a family and just what it takes to cope with a child or an adult who has been left with major disability caused by a disease.
The foundation urgently needs offices but it is also aware of the needs of children who also have a greater need for premises and care facilities as the foundation wants to be a listening company it also wants to meet the needs of the families of the children and not missing out the siblings of the children and helping them work through the fears they have,the company is in no doubt it is facing an enormous task and that the needs of the families are great we know the need for care services is vital to enable the families to be able to have short breaks just like any other family to go shopping or to go out for a meal we know how vital this is if we are to keep families together the need for special time is vital to rebuild the family unit,The Foundation wants to meet these needs and to help the whole family unit.
We know that this is going to be an uphill struggle and we also know that we will need funding, to help the family we will be helping the children we want to be there for both mum and dad and brother or sister of the patient who has his or her own massive struggle ahead of him or her we want to be there for both of them we want to help them at every corner they have to turn,We are asking you the reader to feel how our families feel their lives have been blown apart its not of their making its just that its genetic and it could happen to anyone out there the Patients need our help now the families who we deal with need our help they need it today not tomorrow .
We ask you to put your hand in your pocket and with us help these children and their families deal with the effects of an Ultra Rare Disease or the aftermath of a Diagnosis of a child or an adult with a Rare Disease all that it takes is the trigger to change a families life for ever and it is all in the genes and Rare Disease Usually strikes children when they are five year old We NEED YOUR HELP AND WE NEED IT NOW you can join our Rare Diseases Find A Cure Campaign Text Us @RDFC13 £2/£5/£10 to 70070To Donate Now. eg RDFC13£10 or go to http://uk.virginmoneygiving.com/charities/TheUltraRareDiseases&DisabilitiesFoundation or http://www.easyfundraising.org.uk/causes/urddad/ or by Bank Transfer To The Ultra Rare Disease,Disorders & Disabilities Foundation Danske Bank Sort Code 95-06-79 AC80014729