A rare conference for Sunninghill mother
SINNINGHILL - Resident, Kelly du Plessis has been chosen to represent South Africa at the European Conference on Rare Diseases and Orphan Products.
Du Plessis, a mom and businesswoman, will travel to Germany next month to attend the conference in her capacity as founder and chairperson of the Rare Disease Society of South Africa. The society was formed in May last year, and is a registered non-profit organisation that aims to assist patients and families affected by rare conditions.
The selection of delegates was made by an ad hoc committee of Eurordis (The Voice of Rare Disease Patients in Europe) as part of their fellowship programme.
Kelly is one of only 30 patients’ advocates on whom this honour was bestowed.
The conference will cover research, development of new treatments, healthcare, social care, information, public health and support at European, national and regional levels. It provides a state-of-the-art rare disease environment, and monitors and benchmarks initiatives.
Eurordis fellowships aim at empowering patients’ advocates by offering a platform on which to network opportunities, access information, and share experiences.
Du Plessis, whose’s advocacy skills led to her selection, will share her testimony and analysis of South Africa’s situation with regard to access of information about rare diseases, and the treatment, care and services that are available.
In South Africa, where lack of medical infrastructure, research and support is a problem, the society has become a beacon of hope for families affected by rare diseases.
Its main objective is to raise awareness among the general public, patients, their respective families, the medical fraternity, and decision-makers about rare diseases and their impact on patients’ lives. It also provides the resources for medical care and practical aid for individuals suffering from life-threatening diseases.
Although rare disease patients form a minority in society and receive minimal assistance and attention, there are more people affected by rare diseases than there are HIV/Aids and cancer patients in the world – something of which most people are unaware.
Details:www.rarediseases.co.za
