IPOPI Advocacy & Media Training Workshop Johan Prevot Executive Director 14-15 September 2012 Belgrade Art Hotel

1. IPOPI Advocacy & Media Training Workshop Johan Prevot Executive Director 14-15 September 2012 Belgrade Art Hotel (BAH) Belgrade, Serbia

2. Contents Introduction IPOPI Structure Strategic Objectives Workshop Objectives & Follow Up

3. 1. Introduction • IPOPI is the Association of national patient organisations dedicated to improving awareness, access to early diagnosis and optimal treatments for primary immunodeficiency patients worldwide

4. 1. Introduction • IPOPI came into being as a result of an initial meeting in Oxford, UK, in September 1990, when an interim organising committee was established • Two years later in 1992, IPOPI was formally established. in Lugano, Switzerland.

6. 2. Structure Board of Directors Jose Drabwell, Chair (UK) Sven Frandrup, Vice-Chair and Treasurer (Denmark) Dr Teresa Espanol, Chair of Medical Advisory Panel (Spain) Marcia Boyle (USA) DraganaKoruga (Serbia) Vicky Modell (USA) Roberta Pena (Argentina) Martine Pergent (France) Joy Rosario (South Africa)

7. 2. Structure Medical Advisory Panel (MAP) Dr. Teresa Espanol, Chair (Spain) Dr.EwaBernatowska (Poland) Dr. Jose Franco (Colombia) Prof. Andrew Cant (UK) Prof. Luigi Notarangelo (Italy/USA) Dr. Esther de Vries (Netherlands) Prof. Alessandro Plebani (Italy) Dr. Monika Esser (South Africa) Prof.Surjit Singh (India) Prof. Amos Etzioni (Israel) Dr. Klaus Warnatz (Germany) Prof. Alain Fischer (France)

8. 2. Structure • Staff • Johan Prévot Executive Director • Sónia Figueiredo Health Policy and NMO Programme Manager • Magda Lourenço Executive Assistant • Carol Tavener Bookkeeping & Administration • Clare Glynn Financial consultant • David Watters Consultant - Projects

9. 3. IPOPI Strategic Objectives

10. 3. IPOPI Strategic Objectives • IPOPI implements these objectives by • Being the global advocate of the PID patient community in all relevant policy, legislative and regulatory matters • Working in close collaboration with its NMOs, other plasma protein user groups and relevant stakeholders • Working to improve access to early diagnosis and safe and effective treatment for PID patients • Monitoring the international supply of immunoglobulins • Assisting in the development of new NMOs through twinning, advocacy and support programmes • Facilitating a biennial conference in close partnership with the professional organisations for clinicians (ESID) and nurses (INGID)

11. 4. Workshop Objectives • Key Strategic Objective: develop, strengthen and support National Member Organisations • Other relevant strat objectives: ensure optimal access to diagnosis and care & increased visibility • The workshop will build on the key learnings and outcomes of the PID-Haemophilia Series of Advocacy Workshops held in 2009 & 2010 in: • Rome • Amsterdam • Budapest

12. 4. Workshop Objectives • Support the development of advocacy & media skills among PID patient organisations • Support patient organisations to identify and prioritise specific realistic, actionable and achievable advocacy & media campaign plans • Identify priorities facing the PID community in their respective region • Identify patient group advocacy “leaders” and media spokespersons • Role play advocacy and media situations including setting up & attending a policy maker meeting, developing a press release & securing media coverage • Discuss and improve coordination of advocacy campaigns to improve access to diagnosis and care • Follow up and ongoing support from IPOPI for patient organisations to utilise the skills learned during the workshops.

13. 4. Workshop Objectives • ...in a nutshell: • We want YOU to leave the workshop with enhanced skills to run advocacy campaigns in your countries • And know that IPOPI is there to provide support and guidance in your follow up activities!!

14. Thank you to the workshop’s sponsors