Rare Diseases South Africa: A Beacon of Hope
A Personal Journey to Advocacy
Rare Diseases South Africa (RDSA) was founded in 2013 by Kelly du Plessis, driven by a deeply personal journey. When Kelly's son was diagnosed with a rare disease, she encountered the stark reality of limited awareness and support for rare diseases in South Africa. This personal experience ignited a passion to create change, leading to the establishment of RDSA, a non-profit organisation dedicated to advocating for individuals living with rare diseases and congenital disorders.
Championing Rare Diseases
RDSA's mission is to ensure that people living with rare diseases and congenital disorders receive the recognition, support, and health services they deserve. The organisation works tirelessly to influence policy, raise awareness, and provide resources to patients and their families. By engaging with governmental departments, industry players, and strategic stakeholders, RDSA aims to move rare disease policy forward and improve the quality of life for those affected.
Empowering Through Craft: The Rare Bear Project
One of RDSA's standout initiatives is the Rare Bear Project. This community upliftment programme empowers women through crafts, providing them with income-generating opportunities. The project involves handcrafting sustainable, unique gifts for children and rare disease patients. Each Rare Bear is made with love and care, symbolising the support and solidarity of the rare disease community.
For more information about the Rare Bear Project, visit https://www.rarebearproject.org/.
A Multifaceted Approach
RDSA's efforts are multifaceted, focusing on several key areas:
Advocacy: Working to influence policy and ensure that rare disease patients receive the necessary support and treatment.
Awareness: Educating the public and healthcare professionals about rare diseases to improve early diagnosis and treatment.
Support: Providing resources and support to patients and their families to help them navigate the challenges of living with a rare disease.
Research: Promoting and supporting research initiatives to better understand rare diseases and develop effective treatments.
If you want to know more, visit our website at https://www.rarediseases.co.za/.
By spotlighting Rare Diseases South Africa, we hope to raise awareness and support for the vital work they do in advocating for and supporting individuals living with rare diseases in South Africa.
Get in Touch
For more information or to get involved with Rare Diseases South Africa, you can reach out to them through the following channels:
Telephone: +27 10 594 3844
Hotline: 072 476 7552
Email: hello@rarediseases.co.za
More About the Founder
Kelly du Plessis
Kelly du Plessis is the Founder and CEO of Rare Diseases South Africa (RDSA). Kelly is deeply passionate about advocating for rare disease patients, driven by personal experience as a mother to a rare warrior.
In her role at RDSA, Kelly is responsible for ensuring that no rare patient is left behind in the complex healthcare system. She focuses on advocating for policy changes and driving initiatives that support rare disease patients. Kelly's responsibilities also include leading the organisation through the challenges of operating as a non-profit, ensuring the sustainability of their initiatives, and fostering a collaborative and supportive environment for her team.
Kelly describes herself as a "Jack of all trades and master of none," highlighting her hands-on approach to leadership. She is ultimately responsible for keeping the organisation afloat, steering it in the right direction, and ensuring that the team has the necessary resources to succeed. Her strengths lie in her passion for people, her determination to get things done, and her pragmatic approach to advocacy.
Kelly's top activities as CEO include being the voice of the organisation, leading change, and engaging with various stakeholders to drive collaboration. She faces barriers such as maintaining focus, managing time effectively, and dealing with resource constraints.
Overall, Kelly du Plessis is a dedicated and passionate leader, committed to making a significant impact in the lives of rare disease patients and their families.
