Information about Family Fund to access grants
A range of educational resources for students with special educational needs and disabilities, provided free from various organisations, including Oxfam and Booktrust.
There are more than 130 health and wellbeing boards run by local authorities with their health partners. This directory is currently being updated to reflect the changes which have occurred in the NHS after 1 April 2013.
Incluzy helps neurodiverse job seekers match with employers that are committed to diversity and inclusiveness within their workplace. As well as bringing the two together, Incluzy seeks to help spread awareness of various conditions, so that the transition into work for these applicants is as quick and easy as possible whilst taking into account any unique needs.
"Those first four months saw us fighting an unknown battle, our son was sleeping excessively, always exhausted and operating in a dream... he was unable to do some things but had an incredible memory - it was like he was overloading his mind with data. Some people were suggesting he was just a lazy teenager but it was so much more. We saw our GP, a neurologist, psychiatrist, visited a private clinic in Harley Street, had various tests and were being passed from pillar to post with our "interesting case" that no one recognises and we were getting more and more desperate as parents. He was finally diagnosed by a fantastic pediatrician - what we described was not in the text book, but was KLS - a week later we saw her, had a provisional diagnoses and shortly after that our first episode ended... our son was surprised to realise it was Christmas, we celebrated together and then he went into his second episode before New Year - practically confirming the episodic nature of the condition."
This is our story and a selection of rescources we have found which have helped us on our way....
KLS Support UK is a small charity aiming to:
- provide support to persons affected by KLS in the UK and their families.
raise awareness of KLS in the UK amongst the medical profession and the general public.
- support medical research with the aim of finding the cause, treatment and ultimately a cure for KLS.
- co-operate with other KLS groups around the world to further these aims.
What is Kleine-Levin Syndrome (KLS)?
KLS is a rare disorder characterised by recurrent bouts of excessive sleep associated with reduced understanding of the world and altered behaviour. KLS usually starts in the teenage years but can occur in younger children and adults. Each episode lasts days, weeks or months during which time all normal daily activities stop. Individuals are not able to care for themselves or attend school and work. People with KLS coming out of episodes will have little or no memory of what happened during an episode. Between episodes they have normal sleep, understanding and behaviour. KLS episodes may continue for 10 years or more. KLS is sometimes referred to in the media as “Sleeping Beauty” syndrome.
They are the leading UK charity for people with autism (including Asperger syndrome) and their families. They provide information, support and pioneering services, and campaign for a better world for people with autism.
This guidance document explains the "Right to Have" a personal health budget for people eligible for NHS Continuing Healthcare (NHS CHC) and Children and Young People’s Continuing Care (CC) from 1st October 2014 as included in the National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) (Amendment) Regulations 2014 .
A personal budget is a sum of money (additional provision) which will be used to fund provision as set out and agreed in the plan – to meet agreed outcomes.
The budget that will be made available if it is clear that an eligible young person or child needs additional and individual support at home and when out and about in the local and wider community.
Introduction to Personal Budgets
Living with a rare disease can be an isolating experience. RareConnect was created byEURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders) to provide a safe space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources.