Nngwe calls on South African clinicians and scientists to unite in the mission to end the diagnostic odyssey of rare undiagnosed patients by prioritising the interest of the rare disease patient and all other patients above all other interests.

The problem is not with words, it's with application and actions stemming from these words! All diseases are "mind-body" - because the brain is part of the body, and the mind is IN the brain. We don't send a patient with diabetes to psychotherapy to talk themselves out of

S Blitshteyn MD, FAAN, FANA, Dysautonomia Clinic Some doctors have not grasped that patients would need less mental health care and support if their physical illnesses were a) believed b) taken seriously and c) adequately addressed and treated. The financial, emotional and interpersonal toll of chronic illness is enormous.

Although I moved to the UK recently and advocate globally, I will always be #ProudlySouthAfrican and that's where my patient journey took place with #AntimicrobialResistance (#AMR) 🇿🇦 Yesterday, I was honoured to share my story as well as my work as a patient advocate over the

Memories this week! I'll never forget taking this photo in 2017 when I filmed my patient story for my e-Patient Stanford Medicine X scholarship to share my experience around AMR The art behind me is a piece called "One Being" by Deborah Glencross at the Wits University and is featured

Comprehensive paper by Michael Peluso, MD and Steve Deeks just out! Mechanisms of Long COVID and the path toward therapeutics: A detailed discussion on Viral, Immunological and Clotting targets. sciencedirect.com/science/articl…

As we head towards #DysautonomiaAwarenessMonth we need more excellent posts like this 🙏 #MedTwitter #MedicalEducation

Our friends at POTS and D Japan Japan lit up the Yokohama Marine Tower turquoise to for #DysautonomiaAwarenessMonth! It's great to see dysautonomia awareness spreading around the world.

#dyssupportsa #DSSATalks #DysautonomiaAwareness #factofday

#dyssupportsa #DSSATalks #DysautonomiaAwarenessMonth #factoftheday

At ER with a POTS flare - heart rate is 180 at triage. Nurse: “Are you fighting with your boyfriend sweetie?” Me (somewhat indignant) “I don’t have a boyfriend. I have POTS” Doctor: “Single? At your age? How come? You don’t want to be married?” 🧵/1

#dyssupportsa #DSSATalks #DysautonomiaAwarenessMonth #factoftheday

Have you signed up for the World Health Organization (WHO) Task Force of AMR Survivors #WAAW webinar? We will focus on the importance of patient groups in the fight to tackle this global health threat! Register here: who.zoom.us/webinar/regist… #AMRsurvivors #AntimicrobialResistance #AMR

DO YOU THINK PATIENT ORGANISATIONS MATTER TO AMPLIFYING AMR ADVOCACY? Join the World Health Organization (WHO) Task Force of AMR Survivors on 21 Nov, 14:30 CET with our esteemed panel of speakers by registering here: who.zoom.us/webinar/regist… #AMRsurvivors #WAAW #AntimicrobialResistance #AMR

Don’t miss today’s free webinar at 7pm ET! Dr. Jeffrey Boris will be discussing new research findings from his survey on long term outcomes in pediatric #POTS. Register at bit.ly/DysWebinar_Nov…

Excited to present the Australian POTS Registry data at #ACTA2024! Highlighting the burden of disability & QoL impacts for those with #POTS . 🙏 for the support of ⁦SAHMRI Heart⁩ ⁦Australian POTS Foundation⁩ ADARC Uni of Adelaide ⁦SA CVRN⁩ . Let’s drive change!

So well said and it is not just in the USA that sick and disabled people experience this violence perpetrated by insurance companies. Here is a heartbreaking David vs Goliath battle from South Africa fightforzach.org

Today, the @climbing4hae team made it to the summit of Mount Kilimanjaro 🏔️ On behalf of the South African patient community, carers and doctors, thank you to the team for helping us to raise awareness!! ✨ #HAE #hereditaryangioedemaawareness #haesouthafrica #mountkilimanjaro

Rare disease patients can be organ donors too. Having a rare disease doesn’t rule out organ donation. In fact, about 80% of organs from donors with rare diseases are suitable for transplantation. #organdonation #raredisease #rarediseasepatient #careforrare #hereditaryangioedema

This was my first photo at age 35 after a facial reconstruction following a car accident in South Africa and a long 10-year recovery. There were days when I didn't think I'd have a face left, especially after overcoming three years of antibiotic resistant infections in between,