International Seminars


The APF is fortunate to have had the opportunity to represent Australia at a Global Pituitary Patient Advocacy Meeting.  This group now has an action plan for the launch of a global network, whose objectives are to organise an international community of pituitary groups and to advance the groups’ advocacy skills through the sharing of best practices worldwide.


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World Alliance of Pituitary Organizations

HISTORY
An annual Global Pituitary Advocacy Meeting in Zurich was organized and sponsored by Novartis (Global) from 2012 through 2014. It gathered patient advocates from 25-30 countries. The delegates discussed the most critical issues they are facing as national communities and shared best practices. The delegates met outstanding endocrinologists, endocrine nurses, and other professionals, and learned about the diseases and most recent scientific findings in the area.

At the 1st Global Pituitary Advocacy Meeting in Zurich, the delegates prepared and signed the Declaration with a list of 10 aspects of patient life and medical care which should be implemented globally. In October 2014 at the 3rd Global Pituitary Advocacy Meeting, the delegates decided to create WAPO, The World Alliance of Pituitary Organizations. The first meeting of WAPO Steering Committee took place on October 19, 2014.

At this meeting the following was agreed, and the key focus areas were to be to:
•       Establish a global network of pituitary patient organizations 
•       Conduct a global awareness campaign with a priority focus on improving communication between patients and health
         professionals (initially a small campaign)
•       Undertake a global survey of pituitary patient experiences to use as an advocacy tool at a national level and raise
         awareness of gaps in the diagnosis, treatment and care of patients with pituitary conditions (phase 2 effort).

Founding Members, Left to Right: 
Sandra Mesri (Argentina); Susan Kozij (Australia); 
Andrei Andusov (Russia); Martina Boch (Vienna); 
MurielMarks-de Korver (Netherlands).

Over the course of 2015, the Steering committee also worked on the organization set up as well as on the most important activities priorities for 2015-2016. They also worked towards developing membership and governance rules with the view of incorporating in order to have the legal status as a financial support recipient, and to clarify governance procedures.


On the 15th April 2016, the founding members signed the necessary documents for WAPO to be incorporated with the headquarters in the Netherlands. The photo shows the founding members and the Dutch notary (top left) after the documents were signed.


Innaugaral WAPO Summit in Amsterdam

Sue Kozij, Malini Raj and Eric Kozij attended the Inaugural WAPO Summit in Amsterdam.  Thanks must go to WAPO and Ipsen (Australia) who financially supported their attendance.

An engaging agenda was prepared featuring experts in Pituitary conditions as well as key sessions from Patient Organizations and advocates on best practice.



THE AGENDA SESSION PRESENTER


Facilitating research on pituitary conditions: the role of patient organizations

      • Saruñas Narbutas, President of Lithuanian Cancer Patient Coalition, CML Patient Advocate and EUPATI graduate  
Scientific update on pituitary conditions   - What’s new in acromegaly?
     • Prof. Diego Ferone, Assistant Professor at the Department of Endocrinological & Medical Sciences, Uni. of Genoa, Italy 
Scientific update on pituitary conditions   - What’s new in Cushing’s Disease?
     • Prof. Annamaria Colao, Professor of Endocrinology, University of Naples Federico II, Italy
Improving the lives and prospects of people living with pituitary condition
     • Panellists:  Prof. Annamaria Colao, Professor of Endocrinology, University of Naples Federico II, Italy 
     • Prof. Vladislav Cherebillo, Head of Endocrine Surgery Research Department, Federal Almazov North-West Medical
        Research Centre, St. Petersburg, Russia     
     • Prof. Diego Ferone, Assistant Professor at the Department of Endocrinological & Medical Sciences, Uni. of Genoa, Italy 
     • Judith van Eck, Endocrine Nurse Specialist, Erasmus Medical Centre, The Netherlands  
Quality of Life after treatment for Cushing’s Disease: towards identification to modify factors to improve general wellbeing
     • Prof. Alberto Pereira Arias, Professor of Endocrinology, Leiden University Medical Centre, The Netherlands 
Advancing pituitary patient advocacy globally
     • A medical advisory board: How to use it and how to start one - Ellen Koretz Whitton, Cushing’s Support and Research
       Foundation, US   
     • The experience of Alianza Hipófisis Latinoamericana  - Sandra Mesri, APEHI, Argentina    
     • Raising awareness of rare diseases: Velikan’s experience with a concert - Andrei Andrusov, Velikan, The Russian
        Pituitary Patient Advocacy Group, Russia 
     • Navigating treatment decision making in pituitary conditions: an expert patient’s experience - Malini Raj, Australian
       Pituitary Foundation, Australia  
     • The ANIPI experience - Sheila Khawaja, ANIPI Italy  
     • The Australian experience in promoting earlier diagnosis of pituitary conditions - Sue Kozij, Australian Pituitary
        Foundation, Australia  


In addition to the formal presentations, a series of interactive sessions were conducted. The Open Space and World Café sought to identify key challenges faced by pituitary patients and their organizations as well as key areas of focus for WAPO going forward.

:   Raise awareness about the need for multi-disciplinary teams
:   Developing and sharing common resources (ie. Standard letter for travel)
:   Pregnancy Help
:   Information on aftercare – what to do when you go home
:   How to return to work – Information for employers
:   Various symptom awareness campaigns
:   Supporting the development of new organizations
:   Educating non-specialists
:   Listing of Medicines available in different countries
:   Working together to support advocacy campaigns globally

 


Australian Pituitary Foundation was proud to be a minor sponsor of the Summit.  Eric Kozij filmed the lectures and APF provided professional post production services for WAPO.  

An election of the nominees to the Board was held at WAPO’s inaugural meeting held on the 17th April 2016.  Malini Raj and Sue Kozij from Australia are honoured to work alongside Sandra Mesri (Argentina); Muriel Mark-do Korver (Netherlands); Andrei Andusov (Russia); Sonja Durinck (Canada); Sheila Khawaja (Italy). 


Photo Gallery

 
      
   
   
 

2012 Global Pituitary Meeting

Australian Pituitary Foundation was pleased to have representation at a Global Pituitary Patient Summit in Zurich, Switzerland in October (2012) and would like to extend appreciation and congratulations to the organizers, Novartis Pharmaceuticals, and Mudskipper Business Limited, UK, for a wonderful experience for all.

Novartis sponsored advocates representing pituitary disease organizations to gather to learn from each other and from leading medical experts. The goals of the meeting were to explore strategies to address key problems faced by pituitary patient groups and to provide an update on pituitary disease management.
 

Prior to the meeting, all delegates were asked to complete a survey to gather information about what they feel are the key issues faced by patients with pituitary diseases in their country.

Below are the results from the survey. It is interesting to note the similarities of issues faced in most countries. The majority expressed the fact that late diagnosis is a very real problem, along with the challenge of raising awareness and funds as most pituitary disorders are very rare.

How satisfied are you with the care that patients
with pituitary diseases in your country receive?

 

To what degree is misdiagnosis or late diagnosis a common problem
experienced by patients with pituitary diseases in your country?

 

To what degree do patients in your country
have access to the following services?

 


Do patients in your country experience
difficulty in having treatments paid for?

 

Australia really is the “Lucky Country”. We learned that some countries cannot even access proven medications for acromegaly and they do their best to simulate treatments through compounding chemists. And, we are certainly at the top of the ladder when it comes to expertise in knowledge, research and quality care for pituitary patients. Many countries do not have peer support or advocacy groups for the pituitary patient, and this is where APF can be proud of the services we provide to patients and their families.

Of course not everyone spoke English well, (or even at all!) and to assist with language barriers and understanding, a booth of several interpreters translated through head-phones to us.  Resources were shared, and we were proud to distribute our “Understanding Your Pituitary Problems” book, “Is It” Series of Booklets, Newsletters, and other resources.

Please view the full report here.

 

                                 Jenny West – The Pituitary Foundation UK, 
                                        Sue Kozij, Australian Pituitary Foundation, 
                                                Sandra Mesri, APEHI, Argentina.