Invitation - House of Commons event 10/12/14

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Invitation - House of Commons event 10/12/14

Post by sophie » 11 Nov 2014 10:59

Important event for Rare Cancers - organised by Cancer52
House of Commons
10 December 2014

:idea: This is an opportunity to attend this event and invite your MP to meet with you to highlight the care received by patients with rare cancers - such as MDS - as well as discuss their needs.

Read all details on our website:
:arrow: ... e-cancers/
Including how to register.

:!: We will also have copies of our new report - "Call to Action - Management of MDS" highlighting the fact that older MDS patients are sometimes overlooked in terms of access to treatment.
See the report here:
:arrow: ... on-report/
To get your copy of the Call to Action - please email or call our London office (details below).

House of Commons event - Summary:


We would like to inform our patients and their families about this important event to help raise awareness of MDS at parliamentary level.

The event is organised by Cancer52 charity and will be hosted by John Baron MP, Chair of the All-Party Parliamentary Group on Cancer on Wednesday 10th December between 4pm and 6pm in Dining Room A at the House of Commons.

We encourage MDS patients and their families to attend this event and invite their local MPs to join it too.

It is extremely important to involve your MPs in relevant stages of your care, share your concerns and inform them about any of your unmet needs so that they can better represent you and get involved in improving the outcomes for people suffering from rare cancers like MDS. This event provides an excellent opportunity to meet your MPs face-to-face and get them engaged.

Further details about the event from Cancer52 below:

“We are working on this event with Novartis Oncology to raise awareness of rare and less common cancers. As you know 54 per cent of UK cancer deaths are from rare and less common cancers but policy to improve outcomes for patients has focused on the ‘big four’ – lung, bowel, prostate and breast. We believe there must be parity between rare and less common cancers and the ‘big four’. Without this, outcomes for people with these cancers are unlikely to improve.

At the event we will provide English MPs with recently released CCG data which illustrates how many people in their local area are affected by rare or less common cancers. We also want to introduce MPs to charities and patients within their area, and clinicians in the field.

We will need members’ help to encourage patients to attend, and to encourage a wide range of MPs to join the event or to engage with its aims.

As a first step we are asking that all people wishing to attend respond by completing the form – it will ask for some basic details, including postcodes for both your charity and patients so we can work out which MPs to target.

We do hope you will be able to join us, and look forward to seeing responses”

Once registered you will receive a confirmation email with a template letter which you can use to invite your local MP to this event.

If you have any further questions please contact Cancer52 either by email or by calling 0207 260 2741.

Please help us promote this important event via social media by posting a message about it on your Facebook or Twitter account, using #MDSbloodcancer, @MDS_UK and @Cancer52org.
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
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