ASIF News

Update

ASIF have had a very successful few months and we thought it a good time to update you on developments.


Committee

In October 2016 a new Committee was appointed, they are:  Zhivko Yankov, Bulgaria (President), Hedley Hamilton, UK (Vice-President), Andri Phoka, Cyprus (Secretary), Tunkay Duruöz, Turkey, Seung-Ho Lee, South Korea, Ruta Grigiene, Lithuania, Raj Mahapatra, UK.
We said goodbye to two long-standing members or the committee, Seoirse Smith and Michael Mallinson. We are very lucky that now that Michael has retired from the Ankylosing Spondylitis Society in Canada, he has agreed to help ASIF on a voluntary basis.  

New Executive

This year the Committee appointed Jo Davies as Executive Support to the Board.  Jo will be the main contact for all ASIF business and can be reached on asintfed@gmail.com.
 
The board is also supported by Simon Frost, in the role of Treasurer.


Council Meeting, China, 2018

Plans are underway for our next Council meeting which will be in China on 11-13 October 2018. Professor Gu is leading arrangements for the conference which is being hosted by our Chinese Member organisation:  Association of Chinese AS Patients and Medical Advisory Board of Chinese Health Promotion Foundation.

The meeting will be held Guangzhou.  We are developing the programme which will include a variety of speakers and discussions.  If you are interested in attending or have an idea for a presentation, please contact Jo by email on asintfed@gmail.com.

Please watch our website www.ASIF.info  for information updates.


Charity Registration
ASIF is now a charity registered with the Charity Commission of England and Wales, charity number 1173902.  Our new registered address is:

Ankylosing Spondylitis International Federation
27 Old Gloucester Street
London
WC1N 3AX
United Kingdom

 


Business Plan and Budget

ASIF have created a business plan and budget covering the years 2017 and 2020.  This sees an ambitious growth in what ASIF will deliver.  The first elements have been delivered already with the appointment of our first executive member and also of a Treasurer to ensure sound financial management.

We are pleased to say that we have secured funding from Novartis, UCB and Janssen.

The Business Plan includes the ambitions for a number of projects and fund-raising is underway to get these projects financed.  They include:

Website development – To update the website, to create a platform for the best and latest information.  To create a space for members to share information and have discussions – to develop collaboration on projects.  We also hope to get the website translated into other languages.

Information and awareness – We want to increase awareness and reduce the time to diagnosis.  This will involve media campaigns and the development of information leaflets and presentations that will be available on the website and able to be easily translated.  We will create a library of the best information available worldwide.

Increasing membership of ASIF – We have 36 members in 34 countries.  If we increase our membership we will increase our voice on advocacy matters and increase awareness across the globe.  We want to create tools to help the development of new societies in countries where there is no patient representation.

 


Activities

We have partnered with walk as One, to promote awareness in the weeks around World AS day.  This year was the first in that partnership, and we hope to make this a global focus with further activities and awareness campaigns organised around this time each year.  World AS day in 2018 will be on 5th May.

ASIF had a presence at EULAR in both 2016 and 2017.  In Madrid in 2017 the opportunity was taken for the Committee to meet.  There were also many meetings over the 3 days with other patient organisations, e.g. PARE and with industry partners including, Novartis, UCB, Jannsen and Abbvie. 

In furtherance of the business plan, we currently have 4 projects underway.


Press

An article that first appeared in Eular’s magazine, Breakthrough Issue 12, about ASIF and its President: http://www.asif.info/en/index.cfm/asif-news/


Keeping in contact

There has been a gap of some years since the ASIF news was distributed, but we plan to remedy that – and as you can see from this edition, we have already taken the first steps.

We have already updated the ASIF website, and there is more to come.  Please keep an eye on progress here as this will be the main channel for news and updates. 

However, keeping in contact is not a one way thing and we hope that you will feel free to contact any or all of the committee and executive.  Their contacts are all shown below.  If you have any news from your country organisation that you think would e of interest to other members, please do send it to Jo at asintfed@gmail.com   for inclusion in the next newsletter.

Jo Davies, Executive to the Board
Zhivko Yankov, President
Hedley Hamilton, Vice-President
Andri Phoka, Secretary
Lee Seung-Ho, Trustee
Dr Tuncay Durouöz, Trustee
Ruta Grigiene, Trustee
Raj Mahapatra, Trustee
 
 
 

 


Growing together through co-operation, an article by ASIF's President Zhivko Yankov, in Eular's magazine,
Breaktrhough, Issue 12. 

Please click on the article to download a pdf of the whole magazine Breakthrough Issue 12, June 2017.