1. Naz Tanveer Khan, Patient Assistance Program Manager Karachi, 13 th April,2016 Thalassemia International Federation (TIF) Delegation Islamabad Visit (5th - 6th April,2016) Update

2. Development of National Thalassemia Policy- 5 th April,2016 (3rd Regional Meeting). Prior to the Consultative Workshop on Development of National Thalassaemia Policy-5 th April,2016, a collaboration among Safe blood transfusion program (Prof. Hasan Abbas Zaheer ) and Novartis was established for future roadmap on 4 th April,2016. This led towards a great understanding on Thalassemia situational analysis and identifying strategic key stakeholders. Follow up done with actionable 3 rounds of key orientation meetings.

3. 3 Follow up Orientation Meetings 1.A meeting of Dr. Michael Angastiniotis,TIF with Dr Muhammad Adil Akhtar was arranged in the morning of 5 th April,2016. 2.A meeting of Dr. Michael Angastiniotis,TIF with Prof. Hasan Abbas Zaheer was coordinated before start of workshop on the same day. 3.A meeting with 10 key stake holders /Medical experts/TIF delegation (Dr. Michael Angastiniotis and Mr. Stavros Melides) including Prof. Hasan Abbas Zaheer after workshop was carried at Monal followed by Dinner on 5 th April,2016.

4. Glimpses from Development of National Thalassemia Policy-5th April,2016

5. TIF delegation Meeting with Managing Director Pakistan Bait-ul-Mal 6 th April,2016. TIF Delegation was accompanied by Novartis Team,Dr Muhammad Adil Akhtar and Prof. Shah Taj Khan.

6. TIF delegation Visit at Pakistan Thalassemia Center & Pakistan Bait-ul-Mal 6 th April,2016. TIF Delegation was accompanied by Novartis Team,Dr Muhammad Adil Akhtar and Prof. Shah Taj Khan.

7. TIF delegation Visit at Pakistan Thalassemia Center & Pakistan Bait-ul-Mal 6 th April,2016. Press Conference was also conducted where the need of National Thalassemia Registry to be merged with Census 2016 was emphasized by MD,Pakistan Bait-ul-Mal.

8. TIF delegation Visit at Pakistan Thalassemia Center & Pakistan Bait-ul-Mal 6 th April,2016.

9. TIF Roadmap Meeting 6 th April,2016 Highlights. “10-20% budget to be allocated for Prevention”- Maj. Gen Suhaib Ahmed “NGO’s don’t share correct Data so credible and auditable annual report needs to be published” – Prof. Hasan Abbas Zaheer. “There is a strong need to ensure patient’s voice while influencing Government in the phase of Policy Making”- Dr Michael Angastiniotis

10. TIF Roadmap Meeting 6 th April,2016 Highlights. Workshop at Islamabad Serena Hotel was conducted by Dr Muhammad Adil Akhtar and Dr Saqib Hussain Ansari. Priority set up was emphasized. Prof. Hassan Abbass Zaheer as the Focal person for developing services on Qualitative framework. Need established to engage Government to further improve voice especially during the phase of developing National Thalassemia Policy. Patients die due to iron overload not due to poor transfusion facility. Need for a Public Private Partnership. Need to amend Thalassemia Federation of Pakistan constitution to engage Public sector in the federation. There should be guidelines on prevention, Blood Transfusion and Treatment. More focus is required for CVS Training versus Career Counselling. Majority of Government set up provides Treatment access but NGO’s emphasize on Transfusion thus there is a strong need to enhance collaboration among both. Legislation is strongly required. National Advisory board,focal persons identified. Provincial Focal persons identified. Effort on developing Road Map by Thalassemia Federation of Pakistan was appreciated.

11. TIF Roadmap Meeting 6 th April,2016 Highlights. Few Glimpses:

12. TIF Roadmap Meeting 6 th April,2016 Highlights. Few Glimpses:

13. TIF Roadmap Meeting 6 th April,2016 Highlights. Few Glimpses:

14. TIF Roadmap Meeting 6 th April,2016 Highlights. Few Glimpses:

15. TIF Roadmap Meeting 6 th April,2016 Attendance Sheet Scan Participants List