A Patients and Families Support Group

A UK website about atypical Haemolytic Uraemic Syndrome (aHUS)

HELLO FROM “Answers for aHUS”-  FOR THE FEW BY THE FEW

HELLO FROM “Answers for aHUS”- FOR THE FEW BY THE FEW

From today this website* belongs to Answers for aHUS .

Answers for aHUS is a aHUS community group for all affected by aHUS in the UK .

Not a charity in itself, and not a registered membership based organisation.

It will have a “committee” to steer this project for the four years agreed with Kidney Research UK to see what can be achieved.

But Answers for aHUS is something for all those with an interest in aHUS treatment in the UK to support and in turn support themselves.

We hope the relationship develops by not just engaging those who joined aHUSUK and those who came to its meetings; but also those new to aHUS from the moment they come under the aHUS Expert Centre Service in Newcastle upon Tyne.

Answers will be focused primarily on aHUS Research, mainly  in partnership with  Kidney Research UK, for fundraising and engagement of researchers, but also to bring news about aHUS developments and how the  aHUS community can be a part of the research agenda for the disease and the best way to support  and get involved in it

That support and involvement can begin with a meeting in Peterborough ( KRUK HQ) on 15 October 2016 by registering here . Travelling expenses will be covered (or join in by teleconference/SKYPE ).

Also for example you can contribute to aHUS research at any time by using our text fundraising number for mobile phones:

Text ANSWERS to 70111 to donate £3*

*Texts cost £3 plus standard rate text message charge. A minimum of £2.97 depending on your service provider, will be received by Kidney Research UK Charity reg no. 252892 Scottish Charity No SC039245 Helpline: 0845 070 7601.  By using this service, you agree that we may contact you in the future. If you’d rather we didn’t end your text with NO INFO

All the three pounds add up.

Perhaps when major fund raising appeals are being made on TV with massive media  support and celebrities, a fraction of your donation to those causes could be set aside to be donated to aHUS using Text ANSWERS to 70111

Look out for how to use other fundraising channels such as Easyfundraising ( click  for more info ) and ask us to refer you and we get £1 just for that. If you buy on line normally it is an effortless and a costless way of raising research funds.

Answers for aHUS supporter Keren and her friends kept the momentum up by raising funds for aHUS research by supporting the Newcatle upon Tyne Bridges Walk on 2 October

Keep a watch out in Newsletters, Facebook ( Ahusuk)  and Twitter (Answers for aHUS is  @aHUSUKvoice )  for other ways help too.

aHUS is a very, very rare disease and very  few are affected by it; but there are many answers yet to be got. And only a few to help get them.

Be a part of  the few that act together as many, as aHUSUK once did, but now even more so as

Answers for aHUS

 

* the website will take time to switch over but regular viewers will have noticed that some pages have disappeared already and will be replaced in time with new topics. The patient card portal will be retained and the news blog will keep the archive of aHUSUK content,

The will be some appearance changes to the background images including a new logo in time but for now the featured illustration is of the transitional “Answers” logo.

answers-logo-2

 

One Response to HELLO FROM “Answers for aHUS”- FOR THE FEW BY THE FEW

  1. Christine Western says:

    I would just like to,say an enormous thank you to everyone who has been involved with aHUSUK over the last few years because without all of your efforts to get Eculizumab approved, I am sure that our family would now be without a husband and father. It became available in the nick of time for us and we will be eternally grateful.

    Transitioning to Answers for aHUS, with the backing and support of KRUK, will make it easier for anyone with an interest in aHUS to dip in and help as and when they can Then we can all get more answers from all the new developments that are ongoing and improve the outlook for everyone affected even more.

    We know that this isn’t the end of the story so another thank you in anticipation to all the people who are going to help carry this on!

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