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European Haemophilia Consortium “Women with bleeding disorder – equal or forgotten patients?”

European Haemophilia Consortium “Women with bleeding disorder – equal or forgotten patients?”. Brussels, 21 June 2011. EHC Events/Activities in 2011. Round Tables 2011.

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European Haemophilia Consortium “Women with bleeding disorder – equal or forgotten patients?”

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  1. European Haemophilia Consortium “Women with bleeding disorder – equal or forgotten patients?” Brussels, 21 June 2011

  2. EHC Events/Activities in 2011 Round Tables 2011 • 29 March: “Patient Engagement and Empowerment - Involving all health stakeholders to drive better access to treatment for all ” • 21June : “Women and bleeding disorders” • 6 September: “R&D of orphan drugs” WHD - Patient Advocacy Toolkit • EHC developed a Patient Advocacy toolkit designed to support NMOs in their advocacy efforts around World Hemophilia Day 2011 and throughout the year. EU Call for tender • EHC/EAHAD/University of Sheffield/University Medical Centre Utrecht/Fondazione IRCCS Ca’ GrandaOspedale Maggiore Policlinico/Medical Data Solutions and Services Ltd, submitted a proposal on a call to support the European rare diseases information networks. Annual Conference 2011 • 6-9 October 2011 in Budapest, Hungary; Major themes at these conferences are current trends and developments within the treatment of haemophilia, safety and supply of haemophilia products, and regulatory affairs.   

  3. Women with Bleeding Disorder Agenda • 09.00am-09.30am Registration and breakfast • 09.30am-09.45am Welcome by the EHC Steering Committee President, Ad Veldhuizen • 09.30am-09.45am Welcome by the EHC Steering Committee President, Ad Veldhuizen • 09.45am-10.00am The most common bleeding disorders in women/ disease similarities and differences between genders – How to secure early diagnosis and appropriate treatment? - (Dr. Paul Giangrande, Oxford Haemophilia & Thrombosis Centre) • 10.00am-10.15am Obstetric and gynecological complications in women with bleeding disorders / Reproductive Health in Women with bleeding Disorders (Dr. Rezan Abdul Kadir, The Royal Free Hospital, London) • 10.15am-10.30am “I am a women with a bleeding disorder” (Ms. Dorothée Pradines, patient) • 10.30am-10.45am Empowering women to seek accurate diagnosis and healthcare - How patient organisations dominated by “male disease” can shape their agenda towards women problems? The Dutch example (Ad Veldhuizen, EHC Steering Committee President) • 10.45am-11.00am Coffee Break • 11.00am-11.15am A Strategy for Women with Bleeding Disorder – the Irish example (Debbie Greene, the Irish Haemophilia Society) • 11.15am -11.30pm How to promote specific women related health information and policies? • 11.30am -12.15pm Discussion and exchange of views moderated by Dr. Gabriele Calizzani EHC Steering Committee Member • 12.15pm-12.30pm Conclusion by Ad Veldhuizen • 12:30pm–14:00pm Buffet lunch

  4. Thank you! • EHC Headquarters • National Member Organisations Office: • Rue du MarchéauxHerbes 105 / 14 • B-1070 Brussels • Tel. +32-2 521 11 50, Fax +32-2-520 68 66 • E-Mail office@ehc.eu

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