The First Ever Paget's Awareness Day!

The Paget’s Association has declared the 11th January to be Paget’s Awareness Day. Next January will, therefore, see the first ever Paget’s Day to raise the profile of Paget’s disease, both throughout the UK and internationally. We would like all of our members to get involved. There are many ways that you can help raise awareness and you will find a few ideas on the next page.

Over 90% Undiagnosed – Let’s Find Them!

Through Paget's dayresearch, including that funded by the Paget’s Association, there has been great progress in alleviating the effects of the condition. There is, however, still much more to be done. It has been estimated that as few as 7% of those who have x-ray evidence of Paget’s disease actually come to medical attention. Wouldn’t it be great if we could find all those suffering in silence who are still to be diagnosed? This means that for every single case that is identified, there are many others still undiagnosed.

Official Launch of the Paget’s Patient Passport
The Paget’s Association will also be launching the Paget’s Patient’s Passport (details will be in our November Newsletter). This is a patient held record of your condition, which you can take to all your medical appointments as it will detail how Paget’s disease affects you and any treatment you have received.

The New Paget’s Clinical Guideline
The Paget’s Association is delighted that a new patient-centred clinical Guideline has been developed to provide recommendations for the diagnosis and management of Paget’s Disease of Bone in adults. It provides direction to professionals, giving them a base on which to make decisions, and facilitates discussion with patients. Written by specialists in the field of Paget’s, the Guideline has now been endorsed by other experts. It has now been submitted for publication and we will provide full details on this website, when they are available. Because we want the Guideline to be used by every single doctor who sees a patient with Paget’s disease, we will be promoting the Guideline on Paget’s Day.

Why has the Association chosen the 11th January?
The 11th of January 2019 will mark the 205th anniversary of the birth of Sir James Paget, in Great Yarmouth, Norfolk.
Sir James Paget was one of the most respected surgeons of his time. Some of the significant figures that he treated included Queen Victoria and The Prince of Wales. Such was his impact and influence, that as well as being a successful surgeon, he came to be regarded as the ‘Father of British Pathology’. Various universities and institutions bestowed honours on him and he was the President of the Royal College of Surgeons in England, as well as a Fellow of the Royal Society. Sir James had several conditions named after him, one of those, of course, is Paget’s Disease of Bone. We are proud to have Sir James Paget’s great, great grandson, Sir Henry Paget, as a Patron of our Charity. 

We Need You!

The Paget’s Awareness Day is an opportunity to raise the profile of Paget’s Disease of Bone. We are doing as much as we can to promote the Day, but we need your help. We want as many members as possible to get involved. Here are some ideas.

Display a Poster

You can download and print extra posters here soon or request some from the office (0161 799 4646). Visit your local health centre, pharmacy, library, Church or community centre and ask whether they will display the Paget’s Awareness Day poster. You can download a poster here: Paget's Awareness Day POSTER

Take a Photo

We would love it if you could take a photograph of yourself wearing blue and green, for possible inclusion in our May newsletter. Send your photo by email to, [email protected], or post to, The Paget’s Association, Suite 5, Moorfield House, Moorside Road, Swinton, Manchester, M27 0EW.

Donate
Could you donate £10 for research on Paget’s Day? We would like our first ever Paget’s Day, not only to raise awareness but also to raise funds for Paget’s research. See page ? for details of how you can donate and don’t forget to tell us you are donating for Paget’s Day.

Buy a Paget’s Badge 
To promote our work, we will shortly have some new enamel badges. These are available at £3 each. You will be able to order your badge in our online shop.

Wear Blue and Green
One way you can support us on Paget’s Awareness Day is by wearing blue and green, the colours of the Paget’s Association’s logo. Perhaps you have a blue top and a green scarf? If you don’t have anything in blue or green, you can purchase a tie, scarf set or another item of clothing from the Association. Go to the shop.

Knit for Paget’s
Could you Knit something for Paget’s? Perhaps a scarf or a toy? It can be anything you like, so feel free to use your imagination! We would really appreciate it if you could use blue and green to tie in with our Paget’s Day theme.
• You can use your own materials or contact us for wool and needles, if you need them.
• Perhaps your friends will sponsor you to knit.
• When you’ve made your item, decide what you would like to do with it. Here are some ideas:
- Sell it to a friend to raise funds for Paget’s research.
- Send your item to the Paget’s Association so we can sell it to others who would like to support us.
- Make a scarf for friends or family.

Fundraise
Is there anything you can do to fundraise for Paget’s? It doesn’t have to be on Paget’s day itself, but you can still promote the day by putting a poster up or wearing blue and green.
Perhaps your local school will hold a non-uniform day to raise funds or maybe you could do a sponsored walk? The possibilities are endless!

Post on Social Media
Use social media to join in our discussions on the day and share our posts. You can post or tweet your own pictures as well.

Enter our Photo Competition
You could win a £25 shopping voucher plus a Paget’s Goody Bag by entering our Paget’s Day Photograph Competition. The theme is blue and green, which means that we want you to take a photo of anything, as long as the blue and green theme is adhered to. You could, for example, take a photo of a country scene with blue sky and rolling green hills, or blue flowers in a green vase, or a photo of yourself and your family wearing blue and green. The possibilities are endless!
Send your photograph by email or post using the details below. The closing date is the 30th January 2019.
Email your entry to - [email protected] Alternatively, post to Paget’s Day Competition, The Paget’s Association, Suite 5, Moorfield House, Moorside Road, Swinton, Manchester, M27 0EW.
Competition Rules
The competition is for members of the Paget’s Association only. The winner will be selected at random from the correct entries. The Paget’s Association’s decision is final. Winners will be notified within one month after the competition closing date. The prize is non-negotiable, non-transferable and there is no cash alternative. Only one entry per household. The competition is only open to UK residents. The competition is not open to employees or their immediate family. The competition is not open to trustees of the Paget’s Association or their immediate family. The Paget’s Association cannot accept responsibility if emails or hard copies are not received. Incorrectly completed entries will be disqualified. Entries received after the specified closing date will not be accepted. When you enter the competition, you agree to the above rules.

ADD THE 11TH JANUARY, TO YOUR CALENDAR
Help make the first Paget’s Awareness Day a success. Put the 11th January on your calendar and do something, however large or small it may be, to help us raise awareness of Paget’s disease on this special day!

Paget's day