pia.org.uk Report : Visit Site


  • Server:Apache...

    The main IP address: 91.216.163.91,Your server Lithuania,Siauliai ISP:Informacines Sistemos Ir Technologijos UAB  TLD:uk CountryCode:LT

    The description :common variable immunodeficiency cvid, hypogammaglobulinaemia, agammaglobulinaemia, severe combined immunodeficiency scid and x-linked scid, neutropenia, hereditary angioedema hae, x-linked agammaglob...

    This report updates in 16-Jun-2018

Technical data of the pia.org.uk


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Latitude: 55.933330535889
Longitude: 23.316669464111
Country: Lithuania (LT)
City: Siauliai
Region: Siauliu Apskritis
ISP: Informacines Sistemos Ir Technologijos UAB

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Server:Apache
Last-Modified:Sat, 10 Sep 2016 15:56:04 GMT
Connection:Keep-Alive
Date:Sat, 16 Jun 2018 07:01:58 GMT
Content-Type:text/html

DNS

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dns2.bacloud.com.
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ipv4:IP:91.216.163.91
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home news fundraising hae publications services events young adults discussions gp information donations contact us credits helpline disclaimer pia down but not out! a personal message from dr david webster, chair, primary immunodeficiency association (pia) it is with great regret that i have to tell you that the board of trustees has decided to close the pia. this process has already started and should be more or less complete by the new year. this decision was not taken lightly and the ceo, staff and trustees having worked hard during the past year to raise money and keep the organisation alive. as many of you will have read in the last issue of insight , pia sustained a sudden and unexpected reduction in its income when the jeans for genes (j4g) trademark owner, cgdrt, withdrew its licensing agreement to end a successful 15 year relationship with its three founding partner charities - a partnership that provided funds for many important pid research projects and support activities over this period. despite this initial financial blow we were reassured that revenue from the j4g campaign would still be received for three years through a transitional agreement. however this was withdrawn by cgdrt at the eleventh hour. regrettably, and despite the considerable fundraising and other efforts made by our ceo, staff, trustees and some of our members, we were not left enough time to downsize our organisation (office premises and staff) and raise additional funds to survive free of financial risk. against this background, and in accordance with our duties as financial guardians of pia, the trustees felt they had no alternative but to close the charity. fortunately the organisation will be wound up without us being formally insolvent, the expectation being that there will be no outstanding debts. the good times when i was a young consultant immunologist some 35 years ago i realised the importance of a patient support group for primary immunodeficiency and, with a few dedicated patients, set about forming the hgg (hypogammaglobulinaemia) society which then developed into the pia in 1990. right from the start these support organisations for pid patients have on many occasions been crucial in helping to maintain a high standard of care throughout the uk by organising awareness campaigns and influencing decisions on potentially damaging cuts to services. thanks to the great success of the j4g campaigns during the 1990s, and then to some large grants from industry, the pia was able to fund some important research in the uk that has since blossomed; some memorable achievements were early work on gene therapy for life threatening immunodeficiency in infants and children, fostering the hunt for defective genes causing cvid, and a thorough analysis of the psychological problems affecting many pid patients, leading recently to some useful therapy. thanks it is appropriate at this point to acknowledge our debt to professor roland levinsky who, with david watters our first ceo, launched the pia and saw its rapid expansion during the 1990s. subsequent trustee boards have worked hard to keep track of and represent pid sufferers as the number of uk specialist clinics rose from a handful to the 35 we have today. we have always worked closely with the consultant immunologists and specialist nurses who treat most of our members, and many times have appreciated guidance from members of our medical advisory panel. despite uncertainties over the falling level of j4g revenue during the past few years, and the time consuming and difficult negotiations with the j4g charity, the pia has remained constructive and active right until the end. successes in recent years include the prioritising of pid patients to receive immunoglobulin therapy, achieved through combined pressure on the english and scottish departments of health from a group of eminent uk immunologists and our ceo. other advocacy successes included the reinstatement of the pid clinic in southampton and the appointment of a full-time specialist nurse in glasgow . we have also been involved in publishing new guidelines for the treatment and management of primary antibody deficiency, the production of a 'lay' guide to pid for health service managers and a recent pid awareness campaign, which included the first parliamentary reception on pid held in may this year and hosted by pia. during the past few months we have helped to raise the profile of hereditary angioedema (hae), particularly within accident and emergency centres, and are providing affected patients with special ‘alert cards’ to enable rapid treatment of acute attacks. these successes have been due to the dedication of our ceo for the past seven years, , supported by all our staff over the past years - most recently nichola, andrea, kate and helen - as well as our long standing board members, rae mcnairney, jose drabwell, kathryn hennessy and our treasurer, andrew moore who must have had some sleepless nights over the past year! some of these express their sadness for the outcome below. we have also enjoyed long and substantial financial support from pharmaceutical companies, without which we would have been in difficulty much earlier. our sincere thanks to them. finally we should not forget you - the many members who have raised or donated money to the pia. some of your recent achievements are highlighted in the final issue of insight , which will be with you shortly . your efforts have not been wasted and have enabled the pia to play a significant part in maintaining a high standard of care for pid patients in the uk . we thank you all for your impressive support and fundraising efforts over the past 21 years. the future all of us at pia are passionate about the need for a national organisation to represent patients with pid. the pia currently has about 2,200 members and we are doing our best to encourage the development of an alternative organisation as soon as possible. it is ironic that we find ourselves in this situation at a time when the nhs will inevitably be cutting costs and rationalising services. we are already seeing some closures of pid clinics for adults and national representation by a patient group will probably be needed to prevent unplanned and disorganised reductions in services. some dedicated and concerned members are already stepping forward to launch a new organisation, and i hope this will be active by summer 2012 so that it can influence the newly appointed commissioners who will decide on the future of services for rare conditions like primary immunodeficiency. we will retain the confidential database of pia member’s addresses and other contact details in a secure environment for a period of six months in the hope and expectation that we will contact you again before june 2012 with information about the launch of a new organisation. finally, i encourage members to start a dialogue with their local clinical immunologists and specialist nurses on how best to identify suitable people to represent the interests of pid patients in your region, so that they are ready to play a part in any new national organisation which might emerge. having reached the age of 21, this may turn out to be a good time for the pia to re-invent itself. my best wishes to you all for a happy, rewarding and, above all, healthy 2012 dr. david webster chair primary immunodeficiency association top^ standing order and donations what you need to do next. please cancel your standing order/donations to pia as pia will be closing its doors today, 31 december 2011, and closing its bank accounts shortly after this, we ask all those members who have given pia donations over the years by standing order/donation to kindly contact their banks and cancel these . we do appreciate that you have given to pia so generously in the past but we do not want you to be out of pocket. if there are any funds in the bank left over when pia has met its liabilities these will be put towards a

URL analysis for pia.org.uk


http://www.pia.org.uk//#msgdavidwebster
http://www.pia.org.uk//#messagefromtrustees
http://www.pia.org.uk//includes/fundraisingnews.html
http://www.pia.org.uk//#top
http://www.pia.org.uk//events/index.html
http://www.pia.org.uk//helpline/index.html
http://www.pia.org.uk//gp_info.html
http://www.pia.org.uk//publications/pub_confirmation.html
http://www.pia.org.uk//forum/index.html
http://www.pia.org.uk//services/index.html
http://www.pia.org.uk//includes/news.html
http://www.pia.org.uk//contact_us/index.html
http://www.pia.org.uk//secure/index.html
http://www.pia.org.uk//index.html
http://www.pia.org.uk//#msgchrishughan

Whois Information


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Error for "pia.org.uk".

the WHOIS query quota for 2600:3c03:0000:0000:f03c:91ff:feae:779d has been exceeded
and will be replenished in 51 seconds

WHOIS lookup made at 03:31:36 31-Aug-2017

--
This WHOIS information is provided for free by Nominet UK the central registry
for .uk domain names. This information and the .uk WHOIS are:

Copyright Nominet UK 1996 - 2017.

You may not access the .uk WHOIS or use any data from it except as permitted
by the terms of use available in full at http://www.nominet.uk/whoisterms,
which includes restrictions on: (A) use of the data for advertising, or its
repackaging, recompilation, redistribution or reuse (B) obscuring, removing
or hiding any or all of this notice and (C) exceeding query rate or volume
limits. The data is provided on an 'as-is' basis and may lag behind the
register. Access may be withdrawn or restricted at any time.

  REFERRER http://www.nominet.org.uk

  REGISTRAR Nominet UK

SERVERS

  SERVER uk.whois-servers.net

  ARGS pia.org.uk

  PORT 43

  TYPE domain

DISCLAIMER
This WHOIS information is provided for free by Nominet UK the central registry
for .uk domain names. This information and the .uk WHOIS are:
Copyright Nominet UK 1996 - 2017.
You may not access the .uk WHOIS or use any data from it except as permitted
by the terms of use available in full at http://www.nominet.uk/whoisterms,
which includes restrictions on: (A) use of the data for advertising, or its
repackaging, recompilation, redistribution or reuse (B) obscuring, removing
or hiding any or all of this notice and (C) exceeding query rate or volume
limits. The data is provided on an 'as-is' basis and may lag behind the
register. Access may be withdrawn or restricted at any time.

  REGISTERED no

DOMAIN

  NAME pia.org.uk

NSERVER

  DNS1.LAISVAS.LT 91.216.163.11

  DNS2.BACLOUD.COM 185.25.48.2

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