1. IPOPI Advocacy & Media Training Workshop EU Expert Recommendations & The work of PLUS Johan Prevot Executive Director 14-15 September 2012 Belgrade Art Hotel (BAH) Belgrade, Serbia

2. It all started with…… European Parliament STOA Panel, 17 March 2004 EU Advocacy Campaigns 2010

3. Building on growing attention to PID and previous campaigns; EU Expert Recommendations EU Advocacy Campaigns Joint Stakeholder advocacy 1. Political endorsement on a set of key priorities for PID community 2. Policy tool and basis for further campaigns including national ones… Recommendations on: 1. Awareness & Education 2. Screening & Diagnosis 3. Treatment & Management

4. Building on growing attention to PID and previous campaigns; EU Expert Recommendations Key messages & recommendations include: EU Advocacy Campaigns

5. Key messages & recommendations include: EU Advocacy Campaigns

6. Key messages & recommendations include: EU Advocacy Campaigns

7. Key messages & recommendations include: EU Advocacy Campaigns

8. Key messages & recommendations include: EU Advocacy Campaigns

9. PID Forums – SCID Newborn Screening & HTAs in 2011: National RD Plans PID Forum 2012: 26 September Building political momentum around PID issues Recommendations, Parliamentary Questions and EP resolutions EU Advocacy Campaigns

10. Follow up National campaigns –SCID newborn screening meeting, UK, 2011 EU Advocacy Campaigns

11. IPOPI has been involved in a number of other initiatives at EU level To promote the need to take into account the specificities of PIDs in rare diseases policies with regards to: Diagnosis rates/ Awareness Access to therapy - challenges linked to unique treatment plasma protein therapy (immunoglobulins); cost/benefit Varying treatment levels in Europe Awareness and education EU Advocacy Campaigns

12. IPOPI active on following key EU dossiers : Council Recommendations on Rare Diseases – July 2009 & National Rare Diseases Plans – an opportunity for the PID community Pharma package: Patient Information, Counterfeit and Pharmacovigilance Cross-border healthcare directive European Commission Blood Directive & Reports on Voluntary Donations European Commission Committee of Experts on Rare Diseases to advise and assist in formulating all legislation that affects the treatment and care of rare diseases EMA Patients and Consumers Working Party (PCWP) EU Advocacy Campaigns

13. IPOPI works with other patient organisations representing rare plasma related disorders under a coalition group called consisting of: IPOPI & PLUS

14. Activities undertaken by Meeting with Health Commissioner John Dalli October 2011 & Vassiliou May 2008 Policy Meetings 2010: Plasma Protein Therapies in the Treatment of Rare Diseases, Chair: Miroslav Mikolasik Improving Care for Rare Plasma Related Disorders, Chairs: Jorgo Chatzimarkakis / Miroslav Mikolasik IPOPI & PLUS

15. PLUS Call to Action: Better diagnosis rates for plasma related disorders Equal treatment levels Recognition of unique nature of plasma protein therapies in national policies Value of strong patient groups Patient registries Reference Centres Value of national Rare Diseases plans Supply of human plasma MEP Interest Group IPOPI & PLUS

16. IPOPI actively participates in PLUS Stakeholders Consensus Meetings, Dublin Dublin Consensus statements published in Vox Sanguinis EU Parliament Fly-In meetings and meeting with Commission services (2011), Blood Directive Report Active participation in EU Commission survey of the blood, blood components and plasma derivatives market IPOPI & PLUS

17. Participation in Eurordis Rare Diseases activities IPOPI & PLUS