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UK legal, insurance, employment, benefits, statutory services Advice offered by HDA Moderators relates to current UK law or guidelines

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Old 27-04-13, 07:52 AM   #31
Trish
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Default Re: E - Petition

Morning all.

We are now up to 2,410 signatures. That's 70 up on my last posting but I'd like to generate at least another 20 signatures this weekend if possible.


Please take a few moments to read the following; open the link to the petition; sign the petition or double check if your signature has gone through by trying to sign again if not sure :wink
:
Quote:
Originally Posted by Trish View Post
Morning everyone!

We are on 2,340 signatures out of 100,000 needed by Jan 2014 to get the petition 'considered' for debate in the House of Commons.

See Petition HERE

Impossible? Maybe, but that shouldn't stop us trying!.

We are 2,340 signatures out of 10,000 needed by Jan 2014 to attract attention and get a possible 'response' in writing.

Impossible? We are nearly a quarter of the way there so it's very possible

We are 2,340 out of the 2,500 I personally now want to aim for in Steve's memory by 14th May 2013. That's the day we would have been celebrating Steve's 52nd Birthday.

Impossible? NO. It's very possible with your help

However, we are currently averaging around 4 signatures a day now despite advertising on here; Facebook; on other media and sending out many Tweets. To get my 2,500 target I need to get around 8 signatures a day

Where people can only sign the once that limits the signing power of you guys where I know you would have signed every day if you could have.

That said, if you haven't yet signed please PLEASE do sign. It only takes a few minutes. Please also make sure if you have signed that your signature has been verified by clicking on the link they would have e-mailed to you. It's worth trying to sign again if you are not sure. If your signature has gone through it will tell you it's already been cast against the petition.

Please PLEASE send the link and mention the petition to everyone you know in order to urge them to sign.

The full link is http://epetitions.direct.gov.uk/petitions/44660

Add me on TWITTER @TDainton My Twitter account also has my Blog page where you can find out more details on why I felt moved to raise an e-petition in the first place.
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Old 07-05-13, 09:54 AM   #32
Trish
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Default Re: E - Petition

Morning everyone!

We have reached 2,500 signatures out of 100,000 needed by Jan 2014 to get the petition 'considered' for debate in the House of Commons.

See Petition HERE

Impossible? Maybe, but that shouldn't stop us trying!.

We are 2,500 signatures out of 10,000 needed by Jan 2014 to attract attention and get a possible 'response' in writing.

Impossible? We are a quarter of the way there so it's very possible


Where people can only sign the once that limits the signing power of you guys where I know you would have signed every day if you could have.

That said, if you haven't yet signed please PLEASE do sign. It only takes a few minutes. Please also make sure if you have signed that your signature has been verified by clicking on the link they would have e-mailed to you. It's worth trying to sign again if you are not sure. If your signature has gone through it will tell you it's already been cast against the petition.

Please PLEASE send the link and mention the petition to everyone you know in order to urge them to sign.

The full link is http://epetitions.direct.gov.uk/petitions/44660

Add me on TWITTER @TDainton My Twitter account also has my Blog page where you can find out more details on why I felt moved to raise an e-petition in the first place. [/QUOTE]
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Old 19-05-13, 09:13 AM   #33
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Default Re: E - Petition

Morning everyone!

We have reached 2,560 signatures out of 100,000 needed by Jan 2014 to get the petition 'considered' for debate in the House of Commons.

See Petition HERE

My Twitter Account has been suspended again so that puts a bit of a halt on my trying to get the petition out there for more signatures/public awareness and hopefully 'Celebrity' endorsement by way of their ReTweeting it to their Followers. If any of you guys have Twitter Accounts it would be REALLY helpful if you could spend a few moments a week to get the link out there. I can provide suggested wording if you like.


If you haven't yet signed please PLEASE do sign. It only takes a few minutes. Please also make sure if you have signed that your signature has been verified by clicking on the link they would have e-mailed to you. It's worth trying to sign again if you are not sure. If your signature has gone through it will tell you it's already been cast against the petition.

Please PLEASE send the link and mention the petition to everyone you know in order to urge them to sign.

The full link is http://epetitions.direct.gov.uk/petitions/44660

The petition mentions the position on Insurance. I e-mailed the Association of British Insurers and asked them to outline the current position. This is the reply I got:

Thank you for your enquiry. Since 2001 the ABI has had an agreement with the UK government that no predictive genetic test results will be taken into account in applications for insurance except in very specific circumstances:


1. Where the cumulative value of the benefits exceed £500,000 of life insurance, £300,000 for critical illness cover, or of £30,000 a year for income protection insurance; and

2. The predictive genetic test is approved with Government for use with the type of insurance the person has applied for.


For a predictive genetic test result to be approved the following five conditions must be met:

1. The gene and the associated disease must be listed in the UK Genetic Testing Network’s NHS Directory of Genetic Testing to show the clinical sensitivity and specificity of tests for any particular gene pattern, the relevance of the gene pattern to the associated disease, and the availability of reliable tests.

2. The predictive genetic test can be for:

a. A monogenic disorder - that is, a single gene disorder that can be inherited from one or both parents

b. The disease must be late-onset with symptoms delayed until adult ages

c. There must be a high probability that those with the particular gene pattern will develop the disease – that is, there is high penetrance

d. An adverse predictive genetic test result for the particular gene pattern would affect the terms, if any, that an insurance company might offer for the specific insurance cover for which the application is made.

At the moment only one predictive genetic test has been approved by the Government; the test for Huntingdon’s Disease. Therefore this is the only predictive genetic test result which customers need to be aware that they should disclose. Even then someone with an adverse genetic test result for Huntingdon’s Disease need only disclose this test result in specific circumstances, namely:

1. They are applying for Life Insurance. (They are able to take out Critical Illness and Income Protection policies without disclosing this test result).

2. The Life Insurance has a value of over £500,000. (They are able to take out Life Insurance up to this amount without disclosing this test result. Only a small percentage of Life Insurance policies which are taken out in the UK each year have a value of more than £500,000).


I have attached a consumer guide which may be of interest. This was produced by Genetic Alliance UK, with the help and advice of the ABI and with funding provided by our members.

If you have any more questions about this please do not hesitate to get in touch.


The way they wrote the reply sugests there will hardly be any times the discrimmination will ever apply so we are not to worry. My take on that would be... if it's that unlikely to be an issue then why bother with discriminating in the first place? After all.. it's not like these big companies would go bust if those with HD ever needed to claim surely if it's only going to apply in the very rarest of cases? If you look at the 'consumer guide' link it brings it into stark reality that whether it would apply or not the only illlness that gets a mention is Huntington's. Things are changing of course with the new tests for other illnesses (think Angelina Jolie here and the Breast Cancer tests). The public should know about the plight of those with HD as they too will pay our price later on the basis of 'If you tolerate this... then your children willl be next'.
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Old 25-05-13, 10:10 AM   #34
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Default Re: E - Petition

Morning everyone.

We are currently at 2,581 signatures

Would be really great to reach 2,600 by the end of this Bank Holiday Weekend so please keep sharing the link; telling people about the Petition; and, of course, sign if you have not done so already.

Even those who have already signed may want to double check their signature has actually been registered as it does not count until verified by way of clicking on the link that will have been sent to you. It only takes a few moments to double check... Basically try signing again and it will soon tell you if you are already on there

CLICK HERE TO OPEN THE PETITION AND SIGN
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Old 31-05-13, 07:11 PM   #35
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Default Re: E - Petition

Hi everyone.

We are currently at 2,611 signatures

Would be really great to reach 2,650 by the end of this Weekend so please keep sharing the link; telling people about the Petition; and, of course, sign if you have not done so already.

Even those who have already signed may want to double check their signature has actually been registered as it does not count until verified by way of clicking on the link that will have been sent to you. It only takes a few moments to double check... Basically try signing again and it will soon tell you if you are already on there

CLICK HERE TO OPEN THE PETITION AND SIGN
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Old 23-06-13, 06:56 PM   #36
Trish
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Default Re: E - Petition

Hi all

We have reached 2,791 signatures out of 100,000 needed by Jan 2014 to get the petition 'considered' for debate in the House of Commons.

See Petition HERE

Impossible? Maybe, but that shouldn't stop us trying!.

We are 2,791 signatures out of 10,000 needed by Jan 2014 to attract attention and get a possible 'response' in writing.

Impossible? We are over a quarter of the way there so it's very possible


Where people can only sign the once that limits the signing power of you guys where I know you would have signed every day if you could have.

That said, if you haven't yet signed please PLEASE do sign. It only takes a few minutes. Please also make sure if you have signed that your signature has been verified by clicking on the link they would have e-mailed to you. It's worth trying to sign again if you are not sure. If your signature has gone through it will tell you it's already been cast against the petition.

Please PLEASE send the link and mention the petition to everyone you know in order to urge them to sign.

The full link is http://epetitions.direct.gov.uk/petitions/44660

Add me on TWITTER @TDainton My Twitter account also has my Blog page where you can find out more details on why I felt moved to raise an e-petition in the first place. [/QUOTE]
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Old 08-07-13, 01:24 PM   #37
Trish
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Default Re: E - Petition

Howdy all.

Hope everyone is well?

Not stopping but I just popped in to say I heard there was a problem with the E-Petition and the link to sign on was blocking going further (SSL Cert issue at the Gov's website apparently).

Anyhoo

I have been in touch with Government Digital Services and they have fixed the problem but I don't know how long it has been like that. I just hope it hasn't lost us too many potential signatures :(

We currently stand at 2,863.

Thanks to everyone who has continued to share and sign in my absence :) Please keep up the good work and do flag up if you see or hear of any further problems.

Love to all

Trish x

http://epetitions.direct.gov.uk/petitions/44660
Quote:
Originally Posted by Trish View Post
Hi all

We have reached 2,791 signatures out of 100,000 needed by Jan 2014 to get the petition 'considered' for debate in the House of Commons.

See Petition HERE

Impossible? Maybe, but that shouldn't stop us trying!.

We are 2,791 signatures out of 10,000 needed by Jan 2014 to attract attention and get a possible 'response' in writing.

Impossible? We are over a quarter of the way there so it's very possible


Where people can only sign the once that limits the signing power of you guys where I know you would have signed every day if you could have.

That said, if you haven't yet signed please PLEASE do sign. It only takes a few minutes. Please also make sure if you have signed that your signature has been verified by clicking on the link they would have e-mailed to you. It's worth trying to sign again if you are not sure. If your signature has gone through it will tell you it's already been cast against the petition.

Please PLEASE send the link and mention the petition to everyone you know in order to urge them to sign.

The full link is http://epetitions.direct.gov.uk/petitions/44660

Add me on TWITTER @TDainton My Twitter account also has my Blog page where you can find out more details on why I felt moved to raise an e-petition in the first place.
[/QUOTE]
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