Welcome to ASVI
ABOUT US
Amplify Sickle Cell Voices International Inc
Amplify Sickle Cell Voices International Inc is a not profit organisation fully registered with the aim of giving a voice to sickle cell warriors, caregivers and healthcare providers to change the sickle cell diseases narratives.
With the help of supporting Healthcare professionals, one of the main objectives is to be equipped with tools to be better advocates for ourselves. What started of as a series of webinars during the pandemic, the ideal grew to having this organisation. See the Webinars for Season one and two on this link.
Our Vision
To be a sickle cell organisation supporting all sickle cell warriors and caregivers to be the their own best advocates no matter where they are in the world.
Our Mission
To empower and give a voice to sickle cell warriors and caregivers globally for them to enhance their sickle cell disease understanding and management.
Our Values
Amplify Sickle Cell Voices International Inc (ASVI) is an international Organisation created to give Sickle Cell Warriors, Caregivers and Advocates a voice in the safe space to express themselves without fear or favour.
CORE OBJECTIVES
Sickle Cell Disease Awareness
Amplify Sickle Cell Voices International Inc was created after a successful series of webinars discussing sickle cell issues. This is the main objective for this organisation, to increase the awareness in all communities. Every day people learn about sickle cell disease for the first time. So we will continue highlighting this condition every day. Join Us.
Newborn Screening for Sickle Cell
One of the most important management strategies to start early intervention for children born with sickle cell disease is by having Newborn Screening. ASVI’s other objective is to highlight the importance of this screening tool. We advocate that all countries impacted by sickle cell disease implement newborn screening for sickle disease disease.
Blood Donation Awareness
One of the most effective management for sickle cell disease is use of blood transfusion. People impacted can only have blood transfusions if there are people willing to donate blood. Hence ASVI will continue raising awareness about the importance of blood donations in all communities. Blood is essential not only to sickle cell disease management.
Blood Transfusion Education in all communities
Highlighting the importance of blood donations is very important for blood matching purposes for example. However, it is also important to increase the education about the ability for people to accept blood transfusions. There are some myths and misconceptions in different cultures about blood transfusions. ASVI will continue educating the benefits of blood transfusions as well as discuss the risks associated with it. ASVI will ensure that people are well informed and break the myths and misconceptions.
Empower Sickle Cell Warriors and Caregivers
Over the years, people impacted by sickle cell disease have narrated some of the bad treatment they have received from different groups like people within our communities, educators, or even healthcare professionals. ASVI will work with all sickle cell warriors to equip them with tools to be self advocates. One can only advocate for others if they are able to advocate for themselves. ASVI will conduct monthly workshops to work with sickle cell warriors and caregivers to create a workplan to ensure they have tools to advocate for themselves.
Create A Global Sickle Cell Movement
Sickle Cell Disease (SCD) is the most common genetic disorder in the world. However, it remains one of the less funded and less researched conditions in the world. Every year, over 300,000 babies are born with SCD, most of them in the Sub-Saharan Africa. According to CDC, many African countries where SCD is common, up to 3 percent of Newborns may have the disease, and 50 to 90% die below the age of 5 years. ASVI is global Movement that needs more attention, hence one of ASVI’s objectives it to create the attention these communities deserve.