Regional Patient Groups – in association with Leukaemia Care

Rare Disease Day – A special reception at the Science Museum, London

When: Friday 28th February 2014

Time: 12noon to 2pm

Where: Exhibition Road, South Kensington, London, SW7 2DD

On the occasion of Rare Disease Day, a special reception has been set up in conjunction with a year-long campaign called Challenge the Unchallengeable, which aims to increase understanding in the UK of rare diseases and their impact on patients’ lives.
A sculpture will also be unveiled on the occasion – featuring 2000 raised hands – described as follows:
“Your hand will become part of a powerful, contemporary art installation that will be designed by an aspiring British artist. The installation will bring 2,000 hands together as 1, thus serving as a lasting reminder of our combined efforts against rare diseases.  This piece of art will be prominently unveiled on 28th February (Rare Disease Day) 2014, so you will have the opportunity to go and see your hand in the installation and meet others who have made a difference”.

Website http://www.raiseyourhand.co.uk/news

Patients and families are invited to attend this reception – which MDS UK will attend as well – to mark this special day for MDS as a Rare Disease.
We hope to see some of you there.
If you are planning to attend – PLEASE MAKE SURE YOU RSVP – for catering purposes:

Juliet – PR for Raise Your Hand
Tel 01273 20835601273 208356 – or – 0778 465 25200778 465 2520
Email julietmorrison@btconnect.com

Please specify name and number of people attending.  Thank you.
Only a few spaces are now left for the exclusive unveiling this art installation on #RareDisease Day.

More information about this campaign
The campaign aims to increase awareness that as many as one in 2,000 people are affected by a rare disease, many of which are relatively unknown to the general public and in some cases, even to healthcare professionals, yet they have a devastating impact on patients and families.

The idea is that by running stories in the press on people who have a rare disease, tied into the story of the campaign,that we attract 2,000 people to the Raise Your Hand website.
This event is organised and sponsored by pharma company Alexion.

More events and information about International Rare Disease Day 2014

 

This Rare Disease Day 2014 video is now available in seven different languages for you to enjoy and to share. With the focus on Care this year, the 2014 video poignantly demonstrates the kind of care people with rare diseases need and deserve, and the ways family members, health professionals, and the entire rare disease community are working together to provide care.

Created in Barcelona by production company These Glory Days, the Rare Disease Day 2014 video is accompanied by the music of Delorentos, who generously offered the use of their aptly named song Care For.

Besides These Glory Days and Delorentos, a big round of applause goes out to the many individuals and families living with a rare disease who appear in the video, including Maria and Judit; Luis; Roman and Mireia and Carla; Arturo and David; Carla and Bertie and Jordi; Isaac; Nacho and David; as well as the health professionals and researchers who participated. The cooperation in joining together to create the Rare Disease Day 2014 video is emblematic of the unity and solidarity patients and families, professionals and policy makers, researchers and industry are demonstrating to find treatments and care for people with rare diseases. Be a part of the Rare Disease Day momentum – share the Rare Disease Day 2014 video and let’s show the world that it is entirely possible to Join Together for Better Care.
Louise Taylor, Communications and Development Writer, EURORDIS

Feel free to organise your own Rare Disease Day locally – and let us and the following organisations know what you have planned:
Rare Disease UK http://www.raredisease.org.uk/rare_disease_day_2014.htm
And http://www.rarediseaseday.org/news
Genetic Alliance UK http://www.geneticalliance.org.uk/index.html
Facebook – Rare Disease Day https://www.facebook.com/rarediseaseday

EURORDIS http://www.eurordis.org/

Rare Disease UK: “We will be holding receptions in England, Scotland and Wales to mark Rare Disease Day 2014. We will also work with our colleagues in the NIRDP (Northern Ireland Rare Disease Partnership) to hold an all-Ireland event in Belfast on Rare Disease Day.

This year we will be focusing on the importance of implementing the UK Strategy for Rare Diseases which was recently launched on 22nd November. More information on the UK Strategy is available here.”

To register at one of their events across the UK, please follow the links below:
Welsh Assembly, Cardiff – Tuesday 11th February 6pm – 8pm
Scottish Parliament, Edinburgh – Tuesday 25th February 6:00pm – 8:00pm
House of Commons, London – Wednesday 26th February 4pm – 6pm (This event is now full, please check back at a later date for available tickets)
Riddell Hall, Belfast – Friday 28th February 10:30am – 3pm

Contact Campaign – Rare Disease UK needs your help in contacting politicians in each of the UK’s home nations to raise awareness of rare diseases and to encourage them to attend their parliamentary events. You can download template letters and find out more information here.

Your activities to mark Rare Disease Day – we encourage you or your organisation to conduct awareness or fundraising activities of your own to tie in with Rare Disease Day.Things members have done in the past include:
– Organising conferences/events
– Conducting awareness days in schools
– Producing Rare Disease Day materials/literature
– Holding cake/jumble sales etc
– Conducting local media activity
– Holding special Rare Disease Day promotions in charity shops
– Holding stands at hospitals with information about their condition
– Holding Rare Disease Day activities in the workplace

Follow Rare Disease Day on Twitter: @rarediseaseday

 

Important new survey started by EHA – the European Haematology Association.
EHA is interested in finding out if certain medicines are not available in some parts of the country – or in some parts of Europe.
This survey can be completed by anyone who is aware of a shortage or lack of a medicine in the UK or Europe:
Patients, relatives, doctors, nurses, patient groups.

We have a problem… Many European doctors tell us that the most effective medicines are often not available for their patients. Irrespective of whether this is due to shortages, or because the medicine is not affordable or is not marketed in specific countries or for any other reason, lack of access to essential medicines is clearly a problem for hematologists. And in Europe this problem appears to be growing.

	Access to medicines problems occur across the board in medicine, but research amongst pharmacists indicates that hematology is in the top 5 specialties that suffer the most from lack of availability of medicines.  We all know that prioritizing patients, substituting standard regimens with substandard ones or choosing unproven treatment options can have serious consequences for both patients and practice. As the EHA, we feel these risks should be addressed and we believe that access to medicines is an issue that should be high up on the European political agenda. To achieve this, we need your help. Whenever you find a hematology medicine is not available, please let us know; systematically collecting evidence is the first step in addressing these problems effectively.

 

	In short, we call on you to help strengthen our efforts to improve patients’ access to medicine across Europe and report unavailable hematology medicines to EHA today! Please fill out the ‘unavailable medicines’ form. You can find the form on the EHA website  or click here to access it directly. Filling out the form will take no more than 5 minutes. Thank you!

Ally Boyle – who won the Anthony Nolan Award for Best Recruiter of the Year – at the event on the 4th November.

Ally was diagnosed with MDS a few years ago – and this has not stopped him from getting on with things. On the contrary!

 

Ally is a fire fighter by profession in Scotland and has done an amazing work with his colleagues from the Scottish Fire and Rescue Service and Strathclyde Fire and Rescue – to  recruit stem cell donors for Anthony Nolan.

Here is what he says on his Facebook page:
“Fabulous and inspiring evening at Anthony Nolan Awards and delighted to report that we won! Obviously none of this is about recognition but I am very proud of what has been achieved. From the grimmest news on my diagnosis to the knowledge we are saving lives. The credit belongs to the Core Group Andrew Watt, Ian McMeekin, Paul Devlin, Cathy Barlow, Siobhan Hynes, Hamish Macrae, Mark Conlon and our amazing volunteers. 5,000 recruited so far so here’s to the next 5,000 and beyond!”
And this is from the Anthony Nolan website:
http://www.anthonynolan.org/Hidden/ANSAS.aspx

Wonderful stuff Ally and team!  Thank you on behalf of all MDS patients in need of a transplant.

♦
And the next amazing people are Sharon Berger’s children Jonni and Caz, who have been especially commended for BAME Advocate of the Year.
Jonni and Caz have done so much for the recruitment of stem cell donors, after it was decided that their Mum Sharon (who is also our treasurer) needed an urgent bone marrow transplant – see our previous news item on our website).
Through their efforts, they radically changed the number of jewish stem cell donors in the UK – and even further afield.

Here is what Anthony Nolan says about them:
“Earlier this year, Jonni and Caroline launched a campaign to recruit more Jewish donors to Anthony Nolan’s register when they were told that their mother, Sharon, needed a bone marrow transplant. They appealed to the Jewish media and twitter community using the hashtag #Spit4Mum.  In the first four months of 2013, over 1,000 Jewish people joined the Anthony Nolan register compared with only 100 during the same period in 2012.

 

Sharon was diagnosed with myelodysplastic syndrome and was told that she needed an urgent bone marrow transplant to survive. Finding a matching donor was more difficult for Sharon because Jewish people are under-represented on the bone marrow donor register and a donor is most likely to be someone with the same ethnic background as the recipient. Sharon had a bone marrow transplant in July and is recovering well.

Caroline says, “I’m very proud to have been nominated and it is humbling that the campaign has been recognised. I think the award should go to my mum who has bravely tackled blood cancer for the past year. I only hope that the campaign helps find matches for other people facing a similar situation.  Without the incredible work that Anthony Nolan does, my mum wouldn’t have found the hero who saved her life. There is a Jewish saying that ‘to save one life is as if you have saved the world’. That is what Anthony Nolan means to me.”

Jonni adds, “I am pleased to have been able to increase the number of Jewish donors on the register as well as to have raised awareness about the lack of minority ethnic donors on the stem cell register through our #Spit4Mum campaign. Whilst the initial aim was to help my Mum Sharon, who thankfully had a stem cell transplant recently, there is also the satisfaction that I have significantly increased the number of potential donors on the register for everyone in need of a lifesaving transplant in the future.”

Henny Braund, Chief Executive at Anthony Nolan, says, “Jonni and Caroline’s campaign to recruit more Jewish donors to the register has been a huge success and has had a considerable impact on the number of Jewish donors joining the register. We were all so pleased when we heard that their mother, Sharon, had found a donor for her bone marrow transplant. Raising awareness is key to recruiting more donors and it is down to the hard work of supporters like Jonni and Caroline that we are able to help provide lifesaving transplants for people like Sharon.

http://www.anthonynolan.org/News/CAMPAIGN-FOR-JEWISH-DONORS-SHORTLISTED-FOR-NATIONA.aspx?year=2013&month=11

Thank you to both of you Jonni and Caz ! Bone marrow failure patients need more people like you to raise the awareness amongst ethnic communities – where there is a desperate need for more donors to come forward! Fantastic work.

Our next Newsletter is now out.
All members should have received their paper copies by 5th October 2013.

All clinical staff on our database will have received a stock of newsletters by 7th October 2013.

Click on link here:  https://mdspatientsupport.org.uk/what-is-mds/newsletter/

 

Should you NOT have received your copy or stock, please contact us with:

Name
Address
Tel number
Number of copies required

Patients and family members:
If you have recently moved homes, please update us with your new contact details.

Clinical staff:
If you have changed jobs, please let us know – please also tell us who has taken over in our previous hospital – so we update our clinical contacts database.

Thank you all for your kind cooperation

Urgent Clarification on shingles/varicella vaccine policy for MDS patients

MDS specialists have issued the following advice regarding shingles vaccine:

 

“Current advice from the UK MDS Forum is not to give the Live Varicella Vaccine to patients with MDS.”

You can read further information on the topic, on the UK MDS Forum webpage (the specialist website) here: http://www.ukmdsforum.org/

If you are due this vaccine – or if your GP is mentioning it – please refer them to the website above, where they will be able to read further details – or ask for clarifications if needed.