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I.H.S. 24th April 2015
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When in Rome - Travel Reminder!
This is a reminder to you all to make sure your holidays are pleasant, relaxing and enjoyable. In relation to haemophilia, we generally receive the same questions every year so here are some reminders:
  • Make sure if you are travelling abroad you have your EHIC Card and travel insurance with you. The EHIC Card is not the same as travel insurance. EHIC Card is only for treatment in Europe and covers you for exactly the same care that a citizen of the country you are travelling to is entitled too. If something else is required or you need to travel home for medical reasons this is covered by your travel insurance.
  • You should not pay a large or any premium for travel insurance for haemophilia. There are companies that charge no premium and there are some that charge a reasonable premium for extra benefits. Shop around!!!!!!!  Also read the details of your travel insurance, especially on out-patients cover. Some policies only cover in-patient treatment, so it is important for people with haemophilia to have cover for out-patients. This is also very important for the J1’ers!
  • Carry enough treatment with you and make sure you have an extra just to be safe. Talk to the haemophilia centre to discuss what you need.
  • Always carry your factor concentrate on the plane with you. There are two reasons for this. Firstly the baggage area can get very cold and this is not good for certain products. More importantly if your baggage gets lost you could end up without treatment for a day or two.  You are allowed to carry your medication on the place with you. 
  • You need a letter from the haemophilia treatment centre stating you are a patient at the haemophilia centre, with type of bleeding disorder you have, the treatment you are carrying and that you are carrying needles and syringes.
  • Get the details of the nearest haemophilia centres to where you will be travelling. This is little piece of preparation could save you more time and trouble than you can even imagine.  The centres are listed on http://www.wfh.org/en/page.aspx?pid=1264  or  http://www.euhass.org/aspxpages/search.aspx. You can also download the “IHS Travel Safe” App from the Google Play or ITunes stores. If you want a paper version of the Travel Card please contact the office.
  • If an accident does happen, and you do have to go to the hospital, bring your own treatment with you. You may be in a country that uses a different type of treatment, does not have treatment in the hospital you are going to or even in some cases in the country itself. You should also contact the haemophilia centre in Ireland as well.
  • Check visa requirements.
One other question we always get asked is “do I need all of this”?  Simple answer is Yes!  If you prepare all of the above, you are covered and you have a plan of action if anything should happen.  Most of the time you will not use it but when something does happen it’s just a matter of putting the plan into action. When you don’t have these areas covered, issues that can be small and manageable can easily become big, scary and frustrating.  Take the time know and make your holiday as relaxing as it should be!
 
Enjoy the summer!
Declan
 
VHI Women's Mini-Marathon
Hi All,
For those of you who may not know me, my name is Nina Storey and I am one of the staff members here in the I.H.S. This year I am taking part in the VHI Women’s Mini Marathon (10K Race) on the 1st June to fundraise in aid of the Society.  As I am usually a couch potato this is no mean feat for me, so I would really appreciate your support.  To keep myself motivated I have set myself a fundraising target of €200, so if you would like to sponsor me and support the I.H.S, please click on the link below to go my fundraising page on MyCharity.ie and donate.  I would really appreciate any contributions and no amount is too small, every little helps.  I would like to thank everyone who has offered to take part in the race to fundraise and I am really looking forward to seeing you all in Buswells Hotel on the day. 
 Thank you for your support.
Nina

CUH Paediatric Clinic
Monday 11th May
Debbie Green and Fiona Brennan will be in attendance at the haemophilia paediatric clinic that takes place in the Coagulation Centre in Cork University Hospital on Monday 11th May.
If you have an appointment  and would like to drop in for a chat and a cuppa, Debbie and Fiona would be delighted to speak to you.
The Parents Conference 19th - 21st June 2015
The booking form and preliminary programme for this years parents conference has been circulated to all parents this week. The on-line booking form is also available on our website. Places are filling up fast and we have a limited number available so please be prompt in your booking if you wish to attend this event.

The Ageing Conference  15th - 17th May 2015
The closing date for the Ageing Conference has been extended due to popular demand. Applications will now be accepted up until the 1st May. Both the Conference programme and booking form can be viewed on our website or by clicking the links above. If you wish to book a place over the telephone please call the office on 01 657 9900.
Barretstown
As always places for Barretstown camps have been so popular this year, with family camps during Spring and Autumn and kids camps during the summer they have something to suit everyone!! Unfortunately not everyone who is interested in their child attending Barretstown will be offered a place as there are so many families and children to cater for. There is a waiting list in operation and children are offered places as cancellations occur. Each year, I send a reminder letter to families in December with the dates for camp for the following year, the best way to ensure that your family or child can attend is to contact me as soon as possible when you receive the letter!!
 
A very important reminder that this year from October 29th – November 1st 2015 Barretstown are having their second bleeding disorders camp where all children with a bleeding disorder aged from 7 – 17 years can take part in camp over the Halloween Break!!  There are already lots of places taken up so please register your interest for this camp by emailing fiona@haemophilia.ie or you can call Fiona at 01 657 9900.
 
If you or your child have attended a Barretstown Camp in the past and would like to share your experience with other families who have not witnessed the magic of Barretstown, I would love to hear from you. You can email a few lines summing up your weekend in Barretstown to fiona@haemophilia.ie
 
For those of you who have yet to go to camp this year, I hope you have a magical experience and fingers crossed I will see lots of your little ones at Session 7 in Autumn.
 
Fiona Brennan
A day without Laughter is a day wasted!
Let's not waste anymore days!!! Join the I.H.S. for a night of fun at the Laughter Lounge on Thursday 28th May 2015.  4 comedians and will be followed by a late bar with a DJ. The show starts at 8.30pm with a free cocktail for those who arrive between 7pm and 7.30pm. To support the I.H.S. all you need to do is purchase your tickets directly from us here in the office. Tickets are € 25 each and all proceeds from the sale of the tickets will come to the I.H.S.   

Don't delay, contact Nina on 01 6579900 or email nina@haemophilia.ie to purchase your tickets.  
World Hemophilia Day

To celebrate World Hemophilia Day the I.H.S. held a coffee morning in the office on Friday 17th April @ 10.30 a.m.. It was very successful and brilliant to have a chat with all the members. It is always a great opportunity to bring new and old members together. We had our youngest member Aidan attend who is only 7 months old, he had a great time wrapping staff around his tiny finger. Please feel free to drop into the office anytime if you want to have a chat; however you can only come in if you bring cake!!!
On Friday Afternoon the I.H.S. manned a stand in the main concourse of St. James's Hospital to promote World Hemophilia Day. The nurses on the H and H ward also got involved in the celebrations and sported I.H.S. t-shirts on the ward.
During the weeks leading up to World Hemophilia Day Fiona launched a very successful educational campaign on Facebook to spread the awareness about Haemophilia and provide interesting facts to people who are not familiar with it.
Click here to view the campaign on our Facebook page.
Person with Haemophilia Alex Dowsett To Attempt Breaking Coveted Cycling Record
Alex Dowsett will attempt to break the coveted cycling hour record in May. Alex suffers from haemophilia and uses his sport and lifestyle as the best medicine.
Alex Dowsett will attempt the cycling hour record on May 2 2015. The current record holder is Australia's Rohan Dennis who broke the previous distance record in February 2015 with a distance of 52.491 kilometers. The hour record is huge in cycling, it gets massive interest and media coverage. Bradley Wiggins will also be attempting the hour record in June 2015.

Dowsett who is multiple time British time trial champion talks in the video below talks about how physically difficult it will be. As tough as a normal time trial is, he says at least you get some form of rest time, but if you back off the power even slightly while attempting the hour record then it's game over.                                                                 Peaks.com
To view his latest video click here
To read more of this article click here
The European Haemophilia Consortium (EHC) held an event in Dublin, Ireland, on 16 April to mark the 2015 World Haemophilia Day. The event was held one day prior the official World Haemophilia Day (17 April) so as not to interfere with the national celebrations of EHC members.

During this event, the results of the EHC survey of 38 countries on Tenders and Procurement were unveiled. Organised in 2014, the survey looks at ways in which coagulation factor concentrates are purchased across Europe and to what extent patients and healthcare professionals are involved in the purchasing process, if at all.

Access to treatment for haemophilia, von Willebrand disease and other rare bleeding disorders remains a major problem faced by many patients in Europe. It is estimated that economic barriers are primarily responsible for the lack of treatment. This is particularly exacerbated in countries that continue to face the effects of the financial crisis.

Mr Brian O’Mahony, President of the EHC, noted that the involvement of haemophilia clinicians and patient organisation representatives, which has been promoted strongly by the EHC, clearly leads to a more successful outcome in which the haemophilia patient community can access the safest and most efficacious products in the knowledge that their concerns and priorities are fully included in the decision-making process.
To read more of this article click here


The I.H.S. Spring Newsletter and Annual Report will be distributed to members next week. Both are jam packed with lots of interesting and relevant information. Forget the latest best selling novel - you have your reading sorted for the next few weeks!!





Happy Birthday Fiona

It's Fiona's  birthday today!! She is just thrilled to be here in the I.H.S. office on her birthday!!! We sang happy birthday  to her and helped her eat some chocolate cake!
We would like to wish Fiona a great birthday and hope she has a brilliant day/weekend. 
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