Alexandra Heumber Perry: Inspired by brillant patient advocates, experts, doctors, carers, national alliances of rare diseases from Africa
Alexandra Heumber Perry, CEO of Rare Diseases International, posted on LinkedIn:
“3 days spent at the Rare-X 2024 – Rare Disease Conference in Africa South-Africa Conference, being inspired by brillant patient advocates, experts, doctors, carers, national alliances of rare diseases from Africa. Impressive sharing-knowledge on the challenges and solutions on access to diagnostics, treatment and care, on the key role of Centers of Excellence to improve the patient care pathways, and the importance of supportive and palliative care for Persons Living with a Rare Disease.
Particularly, enlighten by:
– Dr Antoinette Chateau presenting on the multidisciplinary approach for the care of patients with Episermolysis Bullosa in South-Africa
– Dr Michelle Meiring on Palliative Care guideline for rare diseases
– Lauren Pretorius providing a patient perspective in patient involvement in HTA
– Parent Mrs Chantelle Hall advocating for her child having access to treatment for Achondroplasia: to make it registered in South-Africa
– Parent Mrs Tersia Burger presenting about Respite Care, a center to look after childrenn with rare diseases
– Mrs Kim Ballantine about Healthcare compassion fatigue and burnout
– Parent Mrs Chantal MacKenzie a mother’s iphill battle for her children’s survival
– Veronica Lopez Gousset, capacity-building session on policy and Michelle Stein on fundraising
– Members from the African Rare Diseases Alliance coming together Christine Mutena, Roselyn Kanja, Samuel Wiafe, Trudy Nyakambangwe
– South-Africa Rare Diseases Team Kelly du Plessis, Helen Malherbe for having brought such multidisciplinary and impressive list of speakers
And all the discussions I had with the other participants. Toni Roberts, Chris Hendriksz.
This is invaluable and will feed RARE DISEASES INTERNATIONAL ’s mission to be a strong voice at global level for PLWRD.”
Source: Alexandra Heumber Perry/LinkedIn
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