Links
Please Note: While we can recommend sites to you, we CANNOT be held responsible for information that you may collect from these sites
Arrhythmia Alliance
Arrhythmia Alliance was launched at the start of Arrhythmia Awareness Week. We see the Arrhythmia Alliance as the obvious onward development from the AAAW, to maintain momentum, and to bring together allied parties, large and small, professional and lay, to funnel their energies toward common arrhythmia goals together.
www.arrhythmiaalliance.org.uk
Arrhythmia Awareness Week
Arrhythmia Awareness Week is a campaign that aims to improve the quality of life for people living with Cardiac Arrhythmias.
www.aaaw.org.uk
After 16
Family Fund Trust have set up a website version of the book “After 16 – What’s next?” An excellent publication relating to services and independent living issues for young adults.
www.after16.org.uk
Blair Grubb
Blair Grubb, one of the world's most respected authorities on syncope, including POTS, writes about syncope/fainting. A comprehensive article that leaves no stone unturned. A must for all syncope sufferers.
Read the article
Blair Grubb - Another paper on the Autonomic System
Blair Grubb Another paper on the Autonomic System by the world's leading authority. POTS can be due to problems with the autonomic system or the consequence of another condition.
http://www.stars.org.uk/documents/medical/Blair%20GrubbOH+Auto%20Failure.pdf
Birds Bees & Teens
BirdsBeesandTeens is aimed at introducing young people and teenagers to the best health related sites aimed at the younger person. It covers a range of diagnoses from acne to drugs to sexual health to diabetes.
www.birdsbeesandteens.nhs.uk
Contact a Family
Every day over sixty children in the UK are born or diagnosed with a serious disability and the vast majority of them are cared for at home. Contact a Family (CaF) is the only UK charity providing support and advice to parents whatever the medical condition of their child.
www.cafamily.org.uk
Cardiovascular Diseases Specialist Library
The Cardiovascular Diseases Specialist Library is being developed to provide high quality, evidence-based information on all of aspects of cardiovascular diseases. This site is aimed at health professionals with an interest in cardiovascular diseases.
www.library.nhs.uk/cardiovascular
Cardiology-specific safety information from the MHRA
Providing easy access to online Adverse Incident Reporting, Medical Device Alerts and Drug Safety Update information.
http://www.mhra.gov.uk/Safetyinformation/Healthcareproviders/Cardiology/index.htm
Chess Medicare
Chess Medicare offers ‘eKERNEL’ a handheld Tele-ECG with the technical know how from BARC. It can be operated with a mobile phone via Bluetooth.
Visit www.chessmedicare.com
Disability Benefits
Information about benefits can be found on at:
www.disabilitybenefits.co.uk
Disability Grants
Do you have a Disability?
Are you a parent or carer of a Disabled child or adult?
Visit www.disability-grants.org/
DYNAkids
(Dysautonomia Youth Network of America, Inc.)
Due to the impact of their condition, young people with dysautonomia may experience isolation from their peers. Often they must make life style changes in the prime of their life. Obviously, it can be very stressful, traumatic, and life impacting for the entire family. DYNA is a non-profit organization dedicated to serving these individuals.
www.dynakids.org
Familial Arrhythmia Network for Scotland (FANS)
FANS is a managed clinical network hosted by NHS Tayside, and created to improve healthcare services for familial arrhythmia patients, their families and carers.
Find a Heart Rhythm Specialist
Search the extensive Dr Foster database to find a Heart Rhythm Specialist near you.
http://www.drfosterhealth.co.uk/consultant-guide/
Hearts and Minds
There is a link insofar as symptoms of syncope can be confused with epilepsy.
www.epilepsy.org.uk
Heart Rhythm Problems
Information and advice on diagnosing arrhythmias, spotting symptoms such as palpitations, blackouts, dizziness and breathlessness.
Life Cover for All
We know that life is never predictable. That's why we specialise in finding Life Cover for All - throughout the UK. That's why we specialise in finding Life Cover for All especially those with medical conditions including Syncope, RAS and POTS.
Just because you may have a health problem, you still want to live life to the full and that includes taking advantage of the benefits that Life Insurance can provide.
With a medical condition, your life goes on . . . . . . and so should your insurance cover.
MediPAL
MediPAL is a UK company that provides Emergency Contact Cards. They work with many UK charities.
www.medipal.org.uk
MedicAlert
MedicAlert is the only non-profit making, registered charity providing life-saving identification jewellery, supported by a 24 hour emergency telephone service, for individuals with hidden medical conditions and allergies. Medical Identification ensures that in an emergency situation those around you would know that you have a hidden medical condition. Wearing an Emblem also ensures that all information on medical conditions, medications, and next of kin is available. Click on the link to read more information.
www.medicalert.org.uk
MHRA - Faulty Equipment?
Do you have any equipment that you have bought yourself or that has been given or
supplied to you by a GP's surgery, hospital, pharmacy, optometrist or clinic?
If it goes wrong ... ... the MHRA need to know
View poster
www.medicalert.org.uk
'My arrhythmia was diagnosed as epilepsy'
http://www.nhs.uk/Livewell/Healthyhearts/Pages/JulieFear.aspx
National Centre for Independent Living (NCIL)
NCIL is a national support, advice and consultancy organisation that aims to enable disabled people to be equal citizens with choice, control, rights and full economic, social and cultural lives.
NICE T LoC Guidelines
Transient Loss of Consciousness in adults and young people
Nutritionist Resource
Description: Nutritionist Resource provides a huge nutrition support network, enabling visitors to find a nutritionist close to them and appropriate for their needs
www.nutritionist-resource.org.uk
International Alliance of Patients' Organizations (IAPO)
IAPO is a unique global alliance representing patients of all nationalities across all disease areas and promoting patient-centred healthcare around the world.
www.patientsorganizations.org
POTS UK
POTS UK is a team of individuals with personal experience of POTS, some of whom have a medical background, aiming to raise awareness within the UK of this very debilitating condition
www.potsuk.org
POTS Place: A Guide to Postural Orthostatic Tachycardia Syndrome
This web site is about a disorder called Postural Orthostatic Tachycardia Syndrome (POTS). This disorder is characterized by the body's inability to make the necessary adjustments to counteract gravity when standing up. This site provides an overview of POTS and contains sections on symptoms, mechanisms, causes, tests, myths, links, research and newsletters.
www.potsplace.com
POTS: Mysterious Syndrome affects some teens
Article including video of Blair Grubb on POTS affecting some teenage girls.
http://abclocal.go.com/wls/story?section=news/health&id=6505198&status=ok
Primary Times
Primary Times provides up to date listings on activities, courses, workshops or shows for children aged 4-11 and their families. And have lots of relevant articles for parents, children and schools
STARS-US
STARS is the US branch of STARS. They provide information and support for those suffering from Syncope, Reflex Anoxic Seizures, Blackouts and unexplained loss of consciousness.
www.stars-us.org
Syncope While Driving: Clinical Characteristics, Causes, and Prognosis
Travelling with confidence
http://www.medtronic.com/traveling/
Understanding Blackouts - a model for rapid diagnosis
Written by Dr Adam Fitzpatrick, STARS Trustee, who has always maintained that rapid and accurate diagnosis is vital for ensuring the patient follows the appropriate care pathway.
http://www.stars.org.uk/documents/Cardiology%20News%2001.10.08.pdf
www.fainting.com http://www.medtronic.com/reveallanding/
www.seizuresandfainting.com http://www.medtronic.com/reveallanding/
Two sites offered by the company, Medtronic, aimed at US residents needing information about blackouts and how to find a physician.
Your Child’s Health
Your Child's Health is aimed at introducing you to the best Web page on any particular child health related topic. It is aimed at parents, patients and doctors.
www.yourchildshealth.nhs.uk