New Organisation
Nov 30, 2012 15:35:55 GMT
Post by liz2mac on Nov 30, 2012 15:35:55 GMT
Hi all, I'm sorry I haven't been active on the forum for a while, I've been overloaded with UKPIPS work, but am a little more free now. I've just seen the query on another posting about an organisation to replace the PiA. The situation, as I see it, is this:
Dr Susan Walsh has been asked by the charity which employs her, Genetic Disorders UK, (GDUK) to work for 2.5 days a week on a new organisation to cover all Primary Immune Deficiencies. This will be called PID UK. She tells me that, at present, she is devoting her time to getting the website for this organisation up and running and she hopes this will be launched in February of next year. I understand that she intends to work with all of the disease specific organisations such as UKPIPS and HAE UK and that there will be a link from the PID UK website to our own. I think it is very important to note that Genetic Disorders UK is NOT the same as Genetic Alliance UK. Genetic Alliance is a wonderful organisation who have given me and the rest of the UKPIPS trustees so much help over the past months. Amongst other things, they actively lobby on behalf of their members (of which UKPIPS is one) to ensure that the NHS doesn't get the chance to forget our needs. They also support their members if they need to contact government departments about specific situations that arise in the member charities area. Genetic Alliance UK also has two other parts to it, SWAN UK which is an organisation for syndromes without a name, and Rare Disease UK (known as RDUK) .
Rare Disease UK has been very active in the NHS's drive to set in place a plan for Rare Diseases. Primary Immune Deficiencies all qualify as Rare Diseases.
A lot of my time over the past few months has been spent on attending meetings and UKPIPS have been actively involved in the consultation process about this plan, (which could have positive benefits for those offering specialist care to us). However, without the input of Genetic Alliance and Rare Disease UK I would not even have known about it, let alone have been enabled to take an active part in it. The question as to whether the new organisation will dilute the work that we do is one which we wondered about to start with, but I feel reasonably confident that this will not be the case. The Trustees of UKPIPS intend to continue to steer it on a path which will make it stable and effective for many years to come.
Liz
Dr Susan Walsh has been asked by the charity which employs her, Genetic Disorders UK, (GDUK) to work for 2.5 days a week on a new organisation to cover all Primary Immune Deficiencies. This will be called PID UK. She tells me that, at present, she is devoting her time to getting the website for this organisation up and running and she hopes this will be launched in February of next year. I understand that she intends to work with all of the disease specific organisations such as UKPIPS and HAE UK and that there will be a link from the PID UK website to our own. I think it is very important to note that Genetic Disorders UK is NOT the same as Genetic Alliance UK. Genetic Alliance is a wonderful organisation who have given me and the rest of the UKPIPS trustees so much help over the past months. Amongst other things, they actively lobby on behalf of their members (of which UKPIPS is one) to ensure that the NHS doesn't get the chance to forget our needs. They also support their members if they need to contact government departments about specific situations that arise in the member charities area. Genetic Alliance UK also has two other parts to it, SWAN UK which is an organisation for syndromes without a name, and Rare Disease UK (known as RDUK) .
Rare Disease UK has been very active in the NHS's drive to set in place a plan for Rare Diseases. Primary Immune Deficiencies all qualify as Rare Diseases.
A lot of my time over the past few months has been spent on attending meetings and UKPIPS have been actively involved in the consultation process about this plan, (which could have positive benefits for those offering specialist care to us). However, without the input of Genetic Alliance and Rare Disease UK I would not even have known about it, let alone have been enabled to take an active part in it. The question as to whether the new organisation will dilute the work that we do is one which we wondered about to start with, but I feel reasonably confident that this will not be the case. The Trustees of UKPIPS intend to continue to steer it on a path which will make it stable and effective for many years to come.
Liz