I AM STRONGER THAN MY GENETIC DISORDERTsepiso Ndebele (Von Willebrand Disease)
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.
Rare Disease day benefits children and families of children living with rare diseases.
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 for diagnosed and undiagnosed children living with rare diseases in Zimbabwe.
Rare Diseases 2022 Global Campaign
Every year, Rare Disease Day helps to raise awareness for people living with a rare disease all around the world.
⏰Countdown to Rare Disease Day In Zimbabwe -28th of February 2022!
15 continents, 15 portraits, 15 heroes, 15 lives. Share your Story, #shareyourcolors
We are excited to share with you our first Shona translated video🥳 with our special 2022 Hero Tshepiso NaMandlenkosi Ndebele representing all Zimbabweans living with a rare disease.
The video shares the powerful message that together we can break down barriers, demand equity, and paint a brighter future for millions of people living with a rare disease worldwide.
Click play to learn more! This video is available with Shona subtitles.
We would like to send a special thank you to our partners at @eurordis for their continued support and participation in this global campaign.
Joining the Rare Disease Day 2022 Global Campaign, and representing Zimbabwe as our hero is Tshepiso Gloria Ndebele’s Story about living with Von Willebrand Disease.
A year ago, she had a baby boy. The high costs of bringing up a child have meant that her treatment has taken a back seat. Thanks to her family and friends, Tshepiso never loses hope.
22 November 2021 – Launch Day!
We will kick-start the Rare Disease Day in Zimbabwe Campaign live on Heart and Soul ZIM on the 22nd of November at @11am C.A.T to raise awareness about people living with rare diseases in Zimbabwe along with a few other announcements about the various activities we have planned for the year 2021/2022
Save the date and join us on our journey!
17 December 2021- Beneficiary Meeting & Lunch
Coronavirus and the resulting restrictions on day-to-day life have placed immense pressure on families around the world with our beneficiaries and their families needing even greater support.
As an organization, we found it worthwhile to create time to spend at least one day celebrating the Christmas holiday together with our beneficiaries. We believe this will be an opportunity for them to network and share their experiences as a group since they haven’t met as a group.
The Christmas Grocery Drive Project aims to support families of children with rare diseases with basic groceries to supplement their household food basket. The project also aims to offer mental health support to our beneficiaries. This project involved mobilizing and seeking donations of groceries from individuals, supermarkets, companies, and any other interested partners. We collected the donations or made arrangements with the stakeholders to deliver the donations to our offices. The groceries items we are targeting are both perishables and non-perishable basics which include the mealie meal, cooking oil, sugar, salt, flour, beans, and milk.
Activities on the day
On the day our beneficiaries and their caregivers had a platform to share their experiences and issues of concern with us and Claudine Pasi. The doctor managed to address these concerns and encouraged the parents to continue taking good care of their children and making sure they consistently visit the hospital for reviews. This session was then followed by mental health support discussions led by Mrs. Mapundu and one on Psychosocial support led by Jane Maponga. These discussions were aimed at giving psychosocial support to our beneficiaries and their caregivers.
As an organization, we understand all the impact of the burden of care on caregivers of our beneficiaries, and Covid-19 has added even more burden to their lives. Therefore, we feel they need time to relax, refresh and recover from all the stresses.
In the afternoon we organized lunch together and ended the day with the distribution of food hampers. Our hampers comprised of rice, spaghetti, flour, salt, sugar, cooking oil, soap, cooking oil, and beans. We also managed to give our attendees CYC t-shirts, face-masks, and transport reimbursements.
2nd February 2022 – Webinar with Find A Cure
There are over 6 000 rare diseases that are
chronic, progressive, degenerative, disabling, and frequently life-threatening. Due to the rarity of each individual disease and scattered populations, expertise and information are scarce. In health and support systems designed for common diseases people living with a rare disease face inequities in accessing diagnosis, care, and treatments. Join us on the 2nd of February as we represent Zimbabwe as a key panelist with Find A Cure to discuss how we can build a better and brighter rare disease community in Africa.
28 February 2022- Rare disease Day
2. LightUp Ceremony @19.00Hrs- 19.30Hrs. This traditional event is for participants to send solidarity messages through the lighting of buildings with Rare disease colors on a global scale. This year our organization will be representing Zimbabwe in the global chain of lights by illuminating Maxitiles Pomona Building in Harare with pink, blue, and green to celebrate all people living with a rare disease.
Join our Hybrid Event on the 28th of February in commemorating #RareDiseaseDay2022 by helping us raise awareness about rare diseases in Zimbabwe amongst the general public and decision-makers, to advocate and fundraise for the improvement of access to treatment and medical representation for individuals with rare diseases and their families, and encourage more people living with rare diseases to come forward to engage with us and not suffer in silence.
Our event will be live-streamed on our Facebook page. Activities to take note of:
1. Virtual Run/Walk @17.00PM, Maxitiles, Pomona Business Park, Harare Drive.
Registration Link: http://www.cyc.org.zw/index.php/february-2022-virtual-run/
Donation entry fee: USD $5.00/ ZWL Equivalent. The first 20 people to register for our event will receive a free t-shirt, provided you are able to attend the event (RSVP Required)
Hope to see you all there! Let’s raise awareness together!