Raising Awareness for Rare Diseases
By Daisy Mohlomi
As we are at the end of the month of love, there are a lot of ways of showing and giving love to those in need. Supporting causes/initiatives that extend our love to others is one of them.
One such cause is Rare Disease South Africa which aims to ensure that all patients with rare diseases receive access to treatment and supportive care for improved quality of life. Rare diseases include those of genetic origin which can be life threatening or chronically debilitating diseases. These diseases generally have low prevalence in the society and thus special combined efforts by the society are needed to address them.
29th February marks Rare Diseases Day which will continue to raise awareness of these diseases and focus on the daily lives of patients, families and caregivers who are living with a Rare Disease.
One of our very own, Fred Platt, CEO of Accentuate, an Associate of the Thebe Group, is a supporter of the Rare Disease South Africa cause. Fred together with Nicolas Quinn will be running the Two Oceans Marathon in March 2016 to raise funds for kids with rare diseases in honour of Fred’s son, Samuel Platt.
“Looking at my son facing incredible challenges daily and realising that there are so many children like him who do not have access to the resources and facilities that Sam has, made us take up the challenge on their behalf and in honour of Samuel, the bravest little man I know”, says Fred.
Medical costs can run up to hundreds of thousands to treat rare diseases. As you can imagine doctors, would still need to do a lot of tests to get to an accurate diagnosis. The work that the Rare Diseases Society does with the help of generous donors, has a great impact on patients and their families and assists in helping them contribute significantly and positively towards society.
“It has been an extremely challenging journey for Melissa and I without having to worry about the ability to pay the medical bills, I can only imagine the pressure parents must face not having the necessary funding or support structures. Please help us to make a difference by making a donation, however small”, Fred adds.
Let’s support Fred and Nicolas as they run for the cause by donating to the Running4RareDiseases fund. Donate directly on:
- facebook.com/Run4Rare, or
- givenagain.com/activist/153307/projects/12020, or
- Donate via Givenagain.com with a credit card or by direct EFT. Use details below if using EFT:
- Rare Diseases Society of South Africa
- FNB, Sunninghill Branch, 251650
- Account Number: 624 116 58034
- Ref: Fred Platt
For more information on Rare Diseases go to http://www.rarediseases.co.za/
