Rare Diseases SA #AwareAboutRare

August is Organ Donor Awareness Month, & we are so grateful for this opportunity to create more awareness & host a Facebook takeover alongside Tell!

 

Find out more about them at www.tell.org.za

In this months webinar we will be talking to friends and colleagues of CANSA, to discuss what patients and the public should know about Metastatic Melanoma. With an exciting lineup of speakers, we will be addressing skin cancer prevention in South Africa, as well as hear from a skin cancer survivor on her journey with this disease. In addition, we chat to CANSA’s National Relationship Manager, Cara Noble, who will take us through CANSA’s patient support programmes as well as tell us a little more about the MiiSkin – skin check app.

The topic for this webinar is #Connections~ Dr Dion Opperman – Neurologist• Treatment and access• When and why to switch treatment• Taking care of yourself during and after #covid19 • And lastly touching on the importance of #connections in MS~ Kelly du Plessis – CEO of Rare Diseases South AfricaThe need for support groups and how they integrate into the healthcare system~ Dr Helen Malherbe – Director of Research and Epidemiology at RDSAPrevalence of MS in South Africa

June 19th is World Sickle Cell Awareness Day. The international awareness day is observed annually with the goal to increase public knowledge and an understanding of sickle cell disease, and the challenges experienced by patients and their families and caregivers.

June is Myasthenia Gravis Awareness month. In light of this, we will be hosting a webinar to discuss updates on MG treatments as well as MG Disability assessments, for those patients needing to be medically boarded due to their health.

July is Cleft and Craniofacial Awareness Month. WHAT YOU’LL LEARN: Challenges of the COVID-19 pandemic relating to surgeriesClosing the Gap for ParentsA Lived Experience – Sylvia Mchunu

Are you a caregiver and Suffering from Compassion Fatigue? Then this podcast is for you. Hosted by Rare Diseases SA, Kim Ballantine, our speaker, has 29 years’ experience in the area of people development, specifically mentoring and coaching. She has worked for the Human Sciences Research Council as an Industrial and Research Psychologist conducting research, training, and development.

Trimethylaminuria is a metabolic disorder that occurs when the body is unable to break down certain nitrogen-containing compounds such as trimethylamine. This podcast discusses the recommended dietary adjustments to reduce the impact of this condition, as well as an indepth look at the Genetic inheritance of this condition.