December 21, 2016

IPOPI takes part in 11th ICORD meeting

The 11th ICORD meeting took place in Cape Town, South Africa, on October 19-22. It was a successful event that attracted 200 attendees from 27 countries, representing all stakeholders within the rare disease field. The meeting provided time and place for open discussions, presented enhanced  best practice models on rare diseases care and orphan drugs and fostered a real exchange with specialists.

IPOPI Vice Chair, Martine Pergent, was part of the Organising Committee of the 11th annual ICORD (International Conference on Rare Diseases & Orphan Drugs) meeting and represented the Primary Immunodeficiencies (PID) community.

The ICORD conference offered a wide range of sessions with exceptional speakers on diagnostics, congenital malformations, access to treatment, global Rare Diseases policies and programmes, research, quality of life and empowerment of patient support groups. Participants also had the opportunity to network in smaller discussion groups and in a posters’ session. This was the first time an African country hosted the ICORD meeting. It was a great opportunity to get the African continent involved in rare diseases care advances, providing the ideal platform for developing world engagement on the subject.

PIDs at the ICORD meeting

PIDs were part of the programme, as two prominent PID physicians from Africa were involved on behalf of IPOPI. Dr Monika Esser, Stellenbosch University, Cape Town, gave a lecture on Diagnosis for Primary Immunodeficiency by accessing available resources in South Africa. Dr Esser also chaired a session dedicated on quality of life.

Dr James Chipetta, University of Zambia school of medicine, and current chair of ASID, did a presentation on the Spectrum of congenital anomalies among newborns from selected Sub-Saharan African tertiary hospitals: focus on Zambia. He also chaired a session on Diagnosis. Many thanks to both of them for their friendly and active presence!

PINSA, IPOPI’s South African National Member Organisation (NMO) , was also in attendance with a nice and well attended exhibition booth. Joy Rosario, Annie Piennar and other volunteers distributed PINSA materials in a welcoming atmosphere making it a nice place for networking.

Left to right: Dr James Chipeta, Martine Pergent, Annie Piennar, Dr Monika Esser.

Dr James Chipeta presenting

Round table: quality of life

An African Alliance for Rare Diseases

During the conference the African Alliance for Rare Diseases was launched. The Alliance, which is a Rare Disease South Africa initiative, aims to bring all umbrella rare disease patient organisations in Africa into one community. It is aimed at becoming a unified voice in advocacy efforts concerning lack of prevention, delayed diagnosis and unreliable diagnostics, low access to treatment and lack of supportive care for rare disease patients in Africa.