At Rare Disorders Zimbabwe (RDZ), we work to improve the lives of children and young people with rare disorders. We coordinate Zimbabwe’s first genetic clinic, advocate for rare disease policy, raise awareness to combat stigma, and offer social and financial to improve access to treatment and support vulnerable families.
the only facility in Zimbabwe offering diagnostic testing for rare disorders
The Genetic Clinic is a collaboration with Rare Disorders Zimbabwe (RDZ), the iHope initiatives, and the University of Zimbabwe Medical School. It is currently the only facility nationwide offering diagnostic testing for rare disorders.
In Zimbabwe and across Africa access to specialised genetic services is often severely limited, creating a significant barrier for individuals and families seeking answers. RDZ bridges this gap by facilitating access to crucial genetic testing, counseling, and diagnostics.
Our support ensures that these vital services are more readily available, enabling timely diagnosis and informed decision-making for families affected by rare genetic conditions.
We understand that navigating the diagnostic process can be complex, and we’re here to guide you every step of the way.
If you or a family member are seeking a diagnosis for a suspected rare disorder, we encourage you to follow these simple steps:
Talk to your General Practitioner (GP): Your GP is your first point of contact for any health concerns. Discuss your symptoms and concerns with them.
Appointment a the Genetic Clinic: Once the referral is in place, a booking will be made for your appointment at the Genetic Clinic. From there, you will be well on your way to receiving expert care and support.
Knowledge is power.
We strive to empower individuals and families with essential information about rare disorders through various educational initiatives.
We conduct workshops, run impactful social media campaigns, and organize community and schools’ programs to reduce stigma, dispel misconceptions, and promote understanding.
We also proudly recognize Rare Disease Day annually, using this global platform to amplify the voices of the rare disease community in Zimbabwe.
policy changes that will positively impact the lives of those living with rare conditions in Zimbabwe
We work tirelessly to raise awareness of rare disorders among healthcare providers, policymakers, and the general public. By collaborating with key stakeholders, we advocate for improved access to diagnosis, treatment, and care.
Our efforts aim to influence policy changes that will positively impact the lives of those living with rare conditions in Zimbabwe.
To support regional movements for rare diseases, RDZ is a member of the African Rare Disease Alliance, and part of international alliances and multi-stakeholder initiatives including Global Genes, Rare Diseases International and the International Rare Diseases Research Consortium (IRDiRC).
providing access to accurate and up-to-date data
A critical component of our work is the development of Zimbabwe’s first comprehensive National Rare Disorders Database. This essential initiative will serve as a vital resource for healthcare professionals, researchers, and policymakers.
By providing access to accurate and up-to-date data, we aim to improve diagnostic capabilities, facilitate research, and inform evidence-based decision-making for better care outcomes.
Making Essential treatment, care and support accessible to families and patients
The cost of treating a rare disease can be overwhelming, with many families in Zimbabwe struggling to afford essential care. Limited insurance coverage means most must pay out of pocket for treatments, medications, and specialized support services. Through partnerships, we work to ease this burden by providing practical assistance, including food supplies, school fees, and transport support for affected families.
Beyond financial aid, we help rare disease patients access funding for essential medications. By leveraging the collective buying power of the rare disease community, Rare Disorder Zimbabwe (previously Child and Youth Care) negotiates bulk discounts to reduce drug costs. We are also strengthening connections with rare disease organizations and patient networks across Africa to expand access, support and advocacy.