Can you help?

-
The European Organisation for Rare Diseases (EURORDIS) is looking for a patient to represent the community of patients and families affected by Catastrophic APS (CAPS) in a panel of experts. 

This panel of experts will be drawing up draft guidelines which will be developed into best practice treatment for those with CAPS, so it’s important that we patients have a voice there if possible. 

The requirements for the patient representative are:

• you have a good command of English 
• you have some experience of CAPS/APS 
• feel able to advise on patient views and preferences 
• are able to travel to Barcelona, Spain on Wednesday 27th April 2016 
• can dedicate a few hours to help draw up the guidelines 

However there is no need to be an expert – they need a PATIENT’S view not a doctor’s or healthcare professional. 

If you’re interested, please contact urgently Juliette Senecat, Health and Social Projects Manager at EURORDIS: / +33 1 56 53 13 64

Comments

Post a Comment

Popular posts from this blog

Direct oral anticoagulants and APS

-
The UK Medicines and Healthcare products Regulatory Agency (MHRA) has recently issued advice concerning use of direct oral anticoagulants (DOACs) in patients with APS. This advice may result in warfarin being preferred to DOACs for patients with APS until more evidence is available.   The chief aim of drug treatment in patients with APS is to prevent blood clots or strokes.   The main drug used for many years has been warfarin, which thins the blood. There is good evidence from clinical trials that warfarin is effective in preventing clots in patients with APS. There are some disadvantages to using warfarin. Patients have to have regular blood tests (called INR tests ) to make sure that the level of thinning of the blood is at just the right level – if the dose of warfarin is too high there is an increased risk of bleeding. Furthermore, warfarin interacts with a number of other medications so that when those drugs are being taken the INR tests may need to be done more f...
Read more

Important information for patients taking hydroxychloroquine

-
If you are an APS patient who regularly takes hydroxychloroquine (trade names Plaquenil and Quinoric in the UK), please be aware that the Royal College of Ophthalmologists (RCO) have updated their guidelines regarding eye testing.  This is because recent studies have shown that hydroxychloroquine retinopathy is more common than previously reported – around 7 in every 100 patients - especially with long-term use over five years or heavy doses. The risk is much higher in patients who have been taking the drug for 20 years or more: in these patients, between 20-50 out of 100 will develop retinopathy.  This type of retinopathy, also known as ‘bull’s eye maculopathy’, damages the retina and symptoms can include partial colour-blindness, loss of fine detail, blurring or distortion, night blindness and permanent central vision loss.  Therefore, the RCO now recommends that all patients who take hydroxychloroquine for longer than five years should be referred by their GP, or...
Read more

Medicines Discovery Catapult

-
We have published a blog about APS after being approached by the government initiative, Medicines Discovery Catapult. The idea is to promote antiphospholipid syndrome ( APS ) to researchers and scientists in the pharmaceutical and biotech industries. It has given us the opportunity to alert the drug industry to APS and how important new medication is for patients. https://md.catapult.org.uk/what-is-antiphospholipid-syndrome-aps/
Read more