AGM & Conference 2013

Our AGM and Conference will be held on 8th June at the Royal Free Hospital – click here for further info.

European Federation and International Associations for Patients with Haemochromatosis Meeting

April 19th 9am-4pm, University College, Gower Street, LondonWC1E 6BT. Click here for the agenda.
There will be an opportunity to meet delegates as well as hear reports of their projects and activities. Lectures on Bone and Joint, and Hepcidin will also be given. Please let us know if you wish come by April 5th .

Regional Groups:

 

Merseyside & Northwest Support Group

27th April 10.30am at St Mary Magdalene Church, Dingle Way, Appleton, Warrington, WA4 3AW. Tea/coffee
available from 10.00am. Contact Marguerite Smith margueritesmith@blueyonder.co.uk 01253 311060

 

Wessex Regional Group

6th April 10.00am till midday at the Eaton Suite, De Vere Grand Harbour Hotel, Southampton. Coffee and Teas provided and a chance to talk to fellow Haemochromatotics, and hear a presentation. Peter Wells p.wells906@btinternet.com 01202 427298

 

West Midlands Group

Saturday 20th April 10.30am - 1.00pm North Hall, Saint Nicolas Place Centre, 81 The Green, Kings Norton, Birmingham, B38 8RU. Past meetings have been very informal and informative so do come along and join in.Kieran Lynch info@HaemochromatosisWM.org.uk

0121 457 8986

South West of England Support Group

6th April 2.30pm at Plymouth University, Portland Sq Room A102 see no18 here http://goo.gl/DVxnk. Dr Desley White will talk
about diet followed by an informal discussion. Ron McKenzie 01626 859513 mckenzie1320@gmail.com

Northern Ireland

April 13th from 10.30 – 12 noon at The Link, Helen's Bay Presbyterian Church Road, Bangor, BT19 1TP. It is a, bright, spacious, warm, with easy disability access and parking.
Julie Pryce 02891 471150 julieprice580@btinternet.com

For details of other regional groups and member representatives please contact the Society.

 

Haemochromatosis and Blood Donation

People who have genetic Haemochromatosis in the maintenance phase of treatment may be eligible to donate blood with NHS Blood and Transplant (NHSBT) providing that they are fit and well. Firstly, the individual needs to confirm with their
doctor that they would be happy with this plan. The potential donor would the need to contact NHSBT so that an agreement can be completed between the individual, the doctor who is managing the individual’s Haemochromatosis and the clinical team at NHSBT. This is to ensure that the donor fulfils all the usual NHSBT requirements for donors and there is clarity about arrangements for ongoing clinical care. Once accepted, donors with Haemochromatosis will be managed as routine NHSBT donors if they donate at intervals of 12 weeks or longer.

Currently the minimum interval between NHSBT donations is 12 weeks but from November 2012 it may be possible for donors with Haemochromatosis to make arrangements to donate more frequently if this is your normal maintenance interval. The minimum interval will be 6 weeks. Special arrangements will be required each time for donors who wish to donate at intervals between 6 and 12 weeks (Frequent donors) and advanced booking of donation appointments by telephone will be essential.

See www.blood.co.uk for more information about blood donation. The NHSBT donor helpline number is 03001232323

Congratulations to our Everyclick Fundraisers who have raised over £5000! Click here to read more.

 

 

Iron poisoning: I blamed my tiredness, aching joints and lack of energy on being a mum
Many thanks to Christine Megson for writing up her Haemochromatosis Story for the Daily Mail see http://goo.gl/HpWGU

 

 

Janet Fernau was honoured with an MBE in the Queen’s Birthday list for her work in establishing and running the Society.

 

 

Treatment News

The National Blood Service's criteria for donors have been relaxed regarding the upper age limit for regular donors, and allowing diabetics and those with high blood pressure to donate. If you are in the maintenence phase of your treatment you may be able to donate - see www.blood.co.uk for more details

 

< previous | next >