Online Reporter
Obey Musiwa
Herald Reporter
ON Saturday, February 28, Zimbabwe joined the rest of the world in commemorating Rare Diseases Day.
The day is meant to raise awareness on rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.
This year’s commemorations were held under the theme: Equity.
For Ms Sylvia Sanyanga, the founder of MediNate, which was launched on the day, the celebrations were a time to introspect on her personal journey and struggles with her child, who has a rare disease.
She said the parents of children with rare diseases require a lot of support, both financially and morally and it was important that they know where to get that support, hence her motivation to establish her own organisation to assist such parents.
“In my case we had to go and get treatment outside the country and we crowdfunded for it, and we got the support of many Zimbabweans for me to be able to get treatment for my child,” she said as she disclosed the reason why she decided to launch MediNate.
“Today I launched MediNate, which supports treatment for patients in Zimbabwe who cannot access specialised treatment in Zimbabwe, but require it for life-saving issues, especially those with rare diseases.
“It was important for me to launch this organisation today, February 28, because we are commemorating Rare Diseases Day.
“Rare diseases are not rare to each unique family or patient that has a rare disease, because we live with these disorders every day.”
One of her partners, Rare Disorder Zimbabwe founder Ms Trudy Nyakambangwe, highlighted policy gaps and the need for structured frameworks to integrate rare disease patients into national healthcare.
“We currently have gaps in the policy framework that support rare diseases,” said Ms Nyakambangwe.
“We believe that by identifying and establishing a rare disease policy and creating structured referral pathways in centres of excellence and training healthcare professionals, as well as developing national registries, we will be able to include this community in the healthcare system.”
Ms Vimbayi Nyaguwe, who had a child with a rare disease, recalled the support she got from Dr Sanyanga.
“Ms Sanyanga told me that I could actually get donors and funding for my child, who needed a bone marrow transplant in India, which automatically gave me hope.”
Another parent, Ms Chido Chidawanyika, shared her daughter’s journey with congenital adrenal hyperplasia, emphasising the importance of visibility and proper diagnosis.
“My daughter has to be on medication for life to supplement what was not in her body,” she said.
She urged parents not to hide children with rare conditions, but to seek care and embrace them as gifts.
“Other parents are hiding their children because people like me, I faced the challenge when she would ask me what her gender was. Those children are a gift from God. God knows why he gave us our children.”
dyton mupawaenda