08:30 – 10:30
Session 10: Improved quality of life
- Introduction: report from Group F
- Overcoming unmet social and daily life needs of people living with a rare disease – Raquel Castro, EURODIS, France
- Albinism: the stigma and what can be done – Narcisse Kimbassa, Western Cape Albinism Hypo-Pigment Foundation, South Africa
- Measuring the quality of life in patients with rare diseases and setting pragmatic treatment goals – Chris Hendriksz, Salford Royal NHS Foundation Trust, UK
- Quality of life from a parent’s perspective: Sam’s story – Melissa Platt, South Africa
- A program of the National Center for Advancing Translational Sciences: the Genetic and Rare Diseases Information Center (GARD): 13 years of providing access to genetic and rare diseases information – Janine Lewis, GARD, USA
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11:00 – 12:30
Session 11: Patient organisations: a panel discussion
- Introduction: report from Group G
- Patient organisations in Kenya – Christine Mutena, Stepping Stones, Kenya
- Botswana Organisation for Rare Diseases (BORDIS) – what it’s all about – Eda Selebatso, BORDIS, Botswana
- Overview of Genetic Alliance South Africa – Helen Malherbe, Genetic Alliance South Africa, South Africa
- Overview of Rare Diseases South Africa – Kelly du Plessis, Rare Diseases South Africa, South Africa
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12:30 – 13:00
Conference closing
- Benjamin Djoudalbaye, African Union Commission, Ethiopia
- Kelly du Plessis, Rare Diseases South Africa, South Africa
- John Forman, ICORD, New Zealand
- Manuel Posada, ICORD, Spain
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14:00 – 17:00
Capacity Building Workshop for Health care Based NPOS – a RDI / RDSA initiative
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