Rare Disease Day

I AM STRONGER THAN MY GENETIC DISORDER

Tsepiso Ndebele (Von Willebrand Disease)

Rare Diseases

Rare Disease or orphan disease is a disease that affects a small percentage of the population. It is usually chronic and or genetic and present throughout the persons’ entire life. EURODIS considers a disease rare when it affects less than 1 in 2000 citizens. US Rare Diseases Act of 2002- defines rare diseases strictly according to prevalence.

Types of Rare Diseases

There are different types of rare diseases and some of them include, haemophilia A&B, Acquired haemophilia, Von Willebrand Disease, Imperforate Anus, Congenital Adrenal Hyperplasia, Blount’s Disease, Myasthenia Gravis and Trisomy Diseases.

CYC RARE DISEASE DAY 2021

In preparation for the day CYC has planned a number of activities that will help in raising funds for the beneficiaries which include organizing a virtual and physical run/ walk event both the international and local audience as way to raise funds for our rare disease beneficiaries. On the 20th of November 2020 we began our 100 day count down to the 28th of February.

Although there is no rare diseases registry in Zimbabwe rare diseases are defined as diseases that only affect a small number of people. These include people with bleeding diseases, auto-immune diseases and different cancers.

Our beneficiaries

Rare Disease day benefits children and families of children living with rare diseases.

Activities

On Sunday 28 February 2021, Child and Youth Care joined other organizations in commemorating world rare diseases day. Due to the COVID 19 pandemic, we could organize a physical event to commemorate this day with our beneficiaries which resulted in us having online activities that were run on our social media platforms. We featured stories from some of the beneficiaries as a way of celebrating them as well as raise awareness by giving them platforms to share their stories and impact our people.

As Child and Youth Care we participated in the #show your stripes campaign for Rare Disease Day 2021 by wearing zebra printed African material as a way to raise awareness about rare diseases. Families and friends also joined this campaign by wearing their stripes and sharing their pictures with us on our social media platforms. We also shared a spoken word poem by Ernestia Shamwarira a 7 year old girl who showed her support diagnosed and undiagnosed children living with rare diseases in Zimbabwe.