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Medpage Limited T/A Easylink UK manufacture and supply a wide range of electronic Telecare alarms, specialising in Epileptic convulsive seizure alarms, movement sensors, moving sensing alarms. Security products,...

  EDSH/JHS Difficulties in Explaining to Benefits Agencies EDS / JHS

frustration at trying to explain and categorize the varied and almost unquantifiable degrees of disability associated with EDS-H / JHS within...

 Connecting Rare Disease Patients Globally

http://www.rareconnect.org/en/community/ehlers-danlos-syndrome   rare connect
Ehlers-Danlos syndrome (EDS) is a genetic connective tissue disorder characterized by joint hyper mobility, skin hyper extensibility and abnormal wound healing.
Hosted by trusted patient advocates, this is a place where rare disease patients can connect with others globally. Come in and learn more 


  ehospice UK


EDS UK was set up in 1987 to support, advise and inform 

those living with Ehlers-Danlos Syndrome and help them to live a full, active and positive life.



 Eurodis .org Rare Diseases

Specialised Social Services are instrumental to the empowerment of people living with rare diseases and are essential to the improvement of their well-being and health. This section provides the list of services in Europe, as...

CDCN is Leading the Way Towards a CureRather than simply contributing funds for research, the CDCN is taking a more systematic, coordinated, and innovative approach.Read More



 British Epilepsy Association


Support for those whose lives are affected by epilepsy.


 young epilepsy helps supports parents of young epilepsy suffers and the young patients   

  We care about people with epilepsy and their families. We listen to them, we respond to their needs, we reflect their ambitions and we understand their lives. We never forget that epilepsy is about people.

We represent by providing identity, unity and a voice for people with epilepsy, their families and anyone else with an interest in the condition.

We lead by being creative and innovative in our thinking and decisive in our actions. 

We inspire by being positive about epilepsy; by being courageous in what we do and confident in the way we do it.

We organise resources by raising money, encouraging and supporting volunteers and by working with others who share our goals. 

We work locally where people with epilepsy live and nationally across all countries of the United Kingdom.

 Epilepsy Quinte

Women and Epilepsy:

There is a lot to know about epilepsy. If you are a woman, there's even more to consider, ranging from the impact of hormones on seizures, choosing seizure medications, birth control, pregnancy, parenting, menopause, bone health, and more.

Whether you're new to epilepsy or have known about it for years, the more information you have the stronger you'll be. Browse the information for women and make a list of your concerns and questions. Then talk to your health care team about what epilepsy means for you, as a female, at your age and hormonal state. Remember, as your body changes and you go through different life stages, you will have other concerns and information needs!


Providing information on epilepsy to people in Herne Bay, Kent. Placing an emphasis on help, education and research.

 The Truth about Psychogenic NonEpileptic Seizures | Epilepsy Foundation

Psychogenic nonepileptic seizures (PNES) are an uncomfortable topic, one which is...

Eyes see also Blindness 


Coats' disease is also known as Coats' Retinitis, Coats' Syndrome, Exudative Retinitis, and Retinal Telangiectasis. There is some evidence to suggest that Coats' Disease is caused by a somatic mutation of the NDP gene. (Norrie Disease Protein). You can search this link ( http://www.sph.uth.tmc.edu/Retnet/disease.htm ) for "NDP", to find the gene loaction.  Coats’ disease is a very rare  condition where there is abnormal development in the blood vessels behind the retina. The blood rich retinal capillaries break open, leaking the serum portion of the blood into the back of eye. The leakage causes the retina to swell, and can cause partial or complete detachment of the retina. Coats' disease is seen predominantly in males, about 69 percent of the cases. It progresses gradually and affects central vision. It is almost always unilateral (affects only one eye). If caught early, some level of vision can typically be restored. If not caught until it's late stages, complete loss of vision can occur. In it's final stages, enucleation (removal of the affected eye) is a potential outcome.

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