Rare Diseases South Africa @rarediseasessa
We're bridging the gap to improved quality of life, for a better tomorrow, for the #1in15 South Africans affected by rare diseases. rarediseases.co.za Johannesburg, South Africa Joined February 2013-
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Show your support this month by wearing orange. Orange symbolizes energy and positivity. It's also the official colour of Developmental Disabilities Awareness Month. We would love to see you in your best orange. Snap some pics, and please tag us! #RDSA #rarenessawareness #DDAW
Join us for an insightful webinar on understanding Pulmonary Fibrosis! Curious about Pulmonary Fibrosis and its impact on respiratory health? We've got you covered! 📅 Date: 05 April 2024 🕒 Time: 7pm - 8pm 📍 Location: us02web.zoom.us/webinar/regist… #PulmonaryFibrosis #RDSA
#lightupforrare 🩵 RDSA would like to say a massive 'Thank You' to the Voortrekker Monument for lighting up on Rare Disease Day 2024! #lightupforrare #rdsa #rarediseasesSA #rdd
HAPPY RARE DISEASE DAY 🩷💙💜💚 #RDSA #RARENESSAWARENESS #RAREDISEASES #RAREDISEASEDAY24
HAPPY RARE DISEASE DAY 🩷💙💜💚 #RDSA #RARENESSAWARENESS #RAREDISEASES #RAREDISEASEDAY24
DON'T MISS OUT - TUNE IN THIS MORNING famcast.co.za/q/stations/wes… #rarediseases #rdsa #rarenessawareness
Tune in to the very exciting interview taking place this morning with CEO and founder of RDSA on Perron FM. Kelly will discuss all things rare and give insight into RDSA and how rare diseases impact South African! #perronFM #rdsa #rarenessawareness #rarediseases
Tune into 93.1FM this morning as our research assistant, Ankia Greyling goes live on Radio Kragbron with the opportunity to discuss all these rare diseases and Rare Diseases SA. You don't want to miss out! #rarediseasessa #rarenessawareness #rdsa #radiokragbron #93.1fm
Day 3 Fact of the Day: Did you know if all the rare disease patients in the world lived in one country, it would be the 3rd most populated country in the world? Essentially the new USA #forfactssake #rarenessawareness #RareDiseaseDay #RareDiseaseDay #RDSA @rarediseaseday
The #RarenessAwareness has begun ahead of #RareDiseaseDay2024
RarenessAwareness has begun wix.to/HY1aHGI
THANK YOU TO AMICUS FOR COMING ON BOARD AS A SPONSOR AT THE RARE-X CONFERENCE 2024 Amicus Therapeutics is a global biotechnology company at the forefront of advancing therapies for rare diseases. Join the conversation today - rare-x.co.za #Rare-X #RarediseaseSA
CALLING ALL SUPPORT GROUPS Rare-X is an excellent opportunity to bring awareness about your support group to the rare disease community. Please visit rare-x.co.za to register your support group. #Rare-x #RarediseasesSA #Rarediseases
PANEL DISCUSSION – CLINICAL TRIALS Join our panel discussion on the 14th of February at the Rare-X conference. The almost two-hour-long discussion goes into depth on the subject of clinical trials Visit rare-x.co.za to join the conversation #Rare-X #Rarediseases
Just three weeks to go to the highly anticipate Rare-X conference. Don't hang about, register now to join the conversation rare-x.co.za #Rare-X #RDSA #Rarediseases #Rarediseaseawareness
🚨 LAST CALL: REGISTRATION CLOSING SOON FOR RARE X 2024! 🚨 Don’t miss on the incredible opportunity to be part of the highly-anticipated Rare X Conference in Johannesburg between the 14th and 17th of February. Head over to rare-x.co.za to register now!
🚨 LAST CALL: REGISTRATION CLOSING SOON FOR RARE X 2024! 🚨 Don’t miss on the incredible opportunity to be part of the highly-anticipated Rare X Conference in Johannesburg between the 14th and 17th of February. Head over to rare-x.co.za to register now!
Meet Dr Laurenne James Date: Thursday 15 February Time: 11h20 - 11h40 Topic: ISPOR & improving HTAs in South Africa – the role of patients Session: Health Technology Assessments Visit Rare-x.co.za for our full programme of speakers and all things Rare-x.
Meet Dr Niri Bhimsan Date: Thursday 15 February Time: 11h00 - 11h20 Topic: Private sector view Session: Health Technology Assessments Head over to www-rare-x.co.za to view the full programme of speakers and see all things Rare-X. #RDSA #Rare-x #Rarediseases
Meet Dr Mohamedraza Ebrahim Date: Friday 16 February Time: 13h30 – 13h45 Topic: The role of patient organisation’s in gaining access for patients in Africa Session: Breakaway – Policy Head over to rare-x.co.za to see our full programme of speakers.
EURORDIS-Rare Disease.. @eurordis
32K Followers 2K Following An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Rare Disease Day @rarediseaseday
44K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
RDI @rarediseasesint
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RARE Revolution Magaz.. @RareRevolutionM
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Beacon for Rare Disea.. @RareBeacon
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yoni יוני @Primary_Immune
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Effie Parks @OnceUponAGene
5K Followers 3K Following Nuclear Advocate | Award Winning Podcaster | Speaker | Captain Connection | #RareDisease #RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
Genetic Alliance UK @GeneticAll_UK
16K Followers 2K Following National charity working for everyone affected by genetic, rare and undiagnosed conditions. We run the campaign @rarediseaseuk and support network @SWAN_UK.
Global Genes @GlobalGenes
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Patient Worthy @PatientWorthy
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FEDER | Enfermedades .. @FEDER_ONG
39K Followers 8K Following 👉🏻 Somos la esperanza de 3 millones de personas con #enfermedadesraras 🍀 Representamos a 418 organizaciones de pacientes y a 1.546 patologías poco frecuentes
Cambridge Rare Diseas.. @camraredisease
8K Followers 7K Following Improving #RareDisease lives. Creators of #RAREfest, #RAREsummit, Companies Forum & #UniqueFeetCam https://t.co/bWJ8DVF9iw
Rare Disease UK @rarediseaseuk
22K Followers 2K Following National campaign run by @GeneticAll_UK to improve the lives of those affected by rare conditions and all who support them. #RareDisease.
Orphanet @Orphanet
6K Followers 625 Following The reference portal and knowledge base for information on rare diseases and orphan drugs. Orphanet nomenclature, ORPHA codes, Orphanet RD Ontology @inserm
dazzle4rare @dazzle4rare
1K Followers 1K Following Est. 2016 | Signal boost RARE with #dazzle4rare every Aug | #Signalise is our #podcast | Our 🔗 https://t.co/bS5LyCTiZ5
Avril Daly 💚 @avrilbdaly
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IPOPI @ipopi_info
3K Followers 1K Following IPOPI is the association of Primary Immunodeficiency national patient organisations. Improving awareness, access to early diagnosis and optimal treatments.
EJP RD - European Joi.. @EJPRareDiseases
4K Followers 2K Following #EJPRD - European Joint Programme on Rare Diseases | RTs shares likes ≠ endorsement
Share4Rare @Share4Rare
2K Followers 999 Following 💻🌍 Collective platform dedicated to promote research in #RareDiseases 🚀 | Tweets en español: @Share4Rare_es | Coordination: @IRSJD_info
Rare Diseases Ireland @RareDiseasesIE
4K Followers 1K Following Equitable access to healthcare and opportunity for all! RDI - advocating for equitable access for the 300,000 people in Ireland living with rare diseases.
Peer Med Zebra | Rare.. @peermedzebra
71 Followers 295 Following An initiative of @PeerMedicalFDN advocating for intersectionality in care for patients with Rare Diseases so that no one is left behind!
wendy Hall @wendyuys
4 Followers 155 Following
Kat Ellis @DrKrellis
222 Followers 232 Following Lecturer (UCL) & RF (Uni of Surrey) focusing on social cog, sensory processing and autistic traits in genetic syndromes and beyond. Also rubbish at Twitter
lty5lrpr7mn3zp4z @01ydtw8fiod
3 Followers 277 Following If you want to make friends, you can contact me anytime TG：https://t.co/c0KZ1HcvZu WS：https://t.co/rT37y68XYA
xk7w6xum4h2 @6gj8e2c53aeay
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Sarcoidosis When You'.. @sarcoidosisblog
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Barbie for Congress (.. @BarbieHardnHall
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Sisters' Hope Foundat.. @SistersHopeALSP
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Aric johnson @johnsonaric7
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Liquorunterdrucksyndr.. @CSFleaks
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maddie wears a mask �.. @urdisabilitygal
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G Mann @GRigor7Mortis
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Akinwole Fenwa 👨�.. @Akinwole_Fenwa
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inqaba biotec @inqababiotec
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João L. Carapinha, P.. @joaocarapinha
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Craig Nicholson @CraigN
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Lizelle Lubbe @lizelle_ll
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Jana Fokkens @JanaFokkens
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The Med13L Foundation @Med13L_Fdn
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champs @kejr35778464
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rareparenting @rareparenting
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infectious diseases 2.. @Diseases2024
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CRISPRKing @CRISPRKING
747 Followers 4K Following Editing genes, one CRISPR at a time. The future is not written; it's engineered. Builder personality.
Vedika Pharmaceutical.. @Vedika_Pharma
2 Followers 19 Following we're dealing with Chronic Therapy medicine. Rare diseases, HIV HEPATITIS CANCER NEPHROLOGY UROLOGY RHUMATOLOGY etc contact us [email protected]
ManyFacesofMoebius @team_moebius
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Dr Mahmud @dr1322317
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Dima Kassem @DimaKassem1818
28 Followers 104 Following MA Anthropology Student, UWO. Research focuses on an anthropological investigation of social support networks for Persons Living with a Rare Disease.
cillianboushel @cillianbou36694
260 Followers 1K Following
Ann Strauss @Strausa11
20 Followers 226 Following
Francois Venter @FrancoisVenter3
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SRhea @SRhea8
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Fundación Dravet Lat.. @dravetlatam
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2 Followers 14 Following
Rare-X @RareX_2024
114 Followers 345 Following Rare-X 2024, Africa's leading conference on rare disease treatment and access, will be taking place at Indaba Hotel, Johannesburg from 14-17 February 2024
Joseph @Khulubongi
27 Followers 310 Following
EURORDIS-Rare Disease.. @eurordis
32K Followers 2K Following An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Rare Disease Day @rarediseaseday
44K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
RDI @rarediseasesint
5K Followers 699 Following Rare Diseases International - the global alliance of rare disease patients & families
RARE Revolution Magaz.. @RareRevolutionM
12K Followers 8K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Beacon for Rare Disea.. @RareBeacon
12K Followers 11K Following Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
NORD @RareDiseases
41K Followers 3K Following National Organization for Rare Disorders (#NORD) is the voice of the #RareDisease community. Official US sponsor of #RareDiseaseDay.
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yoni יוני @Primary_Immune
41K Followers 27K Following Human being. Jew. Israeli. Primary Immunodeficiency patient. הודו לה׳ כי טוב כי לעולם חסדו #Immunology #raredisease #ISRAEL
Genetic Alliance UK @GeneticAll_UK
16K Followers 2K Following National charity working for everyone affected by genetic, rare and undiagnosed conditions. We run the campaign @rarediseaseuk and support network @SWAN_UK.
Global Genes @GlobalGenes
30K Followers 6K Following Empowering the Next Generation Rare Disease Advocate Merged with RARE-X Dec. 2022. #CareAboutRare
RarasNoInvisibles @NoInvisibles
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Patient Worthy @PatientWorthy
8K Followers 7K Following We're a resource for engaging, informative content and rare patient news, well done.
FEDER | Enfermedades .. @FEDER_ONG
39K Followers 8K Following 👉🏻 Somos la esperanza de 3 millones de personas con #enfermedadesraras 🍀 Representamos a 418 organizaciones de pacientes y a 1.546 patologías poco frecuentes
Cambridge Rare Diseas.. @camraredisease
8K Followers 7K Following Improving #RareDisease lives. Creators of #RAREfest, #RAREsummit, Companies Forum & #UniqueFeetCam https://t.co/bWJ8DVF9iw
Rare Disease UK @rarediseaseuk
22K Followers 2K Following National campaign run by @GeneticAll_UK to improve the lives of those affected by rare conditions and all who support them. #RareDisease.
Orphanet @Orphanet
6K Followers 625 Following The reference portal and knowledge base for information on rare diseases and orphan drugs. Orphanet nomenclature, ORPHA codes, Orphanet RD Ontology @inserm
Redi Tlhabi @RediTlhabi
697K Followers 3K Following Award winning broadcaster, author, moderator. South African. https://t.co/sq21T1mcIT. https://t.co/gYVNsw9vVe. Ex BBC, Aljazeera. MA: IR
dazzle4rare @dazzle4rare
1K Followers 1K Following Est. 2016 | Signal boost RARE with #dazzle4rare every Aug | #Signalise is our #podcast | Our 🔗 https://t.co/bS5LyCTiZ5
Avril Daly 💚 @avrilbdaly
1K Followers 2K Following Health Equality Advocate, lover of art & anthropology, living in Dublin, working for Retina International - views are my own
IPOPI @ipopi_info
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Clinical Trials - Inf.. @ClinTrialsIC
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Jimmy Pollard @JimmyPLowell
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Heidi Grabenstatter @PatientIntv
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Uprising @UprisingClimb
6 Followers 6 Following Climb. Journey. Transform. Book a spot on our next adventure: WhatsApp +27659338113 Registered NPO raising funds for @rarediseasessa
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Kelly du Plessis @kellyrare
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William S. Hempsted @biotechinvestor
683 Followers 1K Following Biotech Investor and a Rare Disease Advocate! .
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Maria Cavaller Bellau.. @maria_cavaller
293 Followers 594 Following Patient Engagement & Therapeutic Development Director @eurordis 🇪🇺 Pharmacist 💊 Global Market Access & Health Economics #rarediseases
INPDA @inpda_org
241 Followers 83 Following A global network of non-profit organisations supporting families affected by Niemann Pick Diseases
Genetica-mente @MenteGenetica
116 Followers 67 Following Genetica-mente is alongside the citizen,public and private health to improve the quality of life by following the principles of Humanity,Ethics and Transparency
Columbus Children's F.. @ColumbusChildrn
328 Followers 898 Following US & Spain based nonprofit foundations accelerating gene therapy cures 4 kids w/ ultra-rare diseases. Time is life & these kids don’t have time to wait.
Laura (Brod) Hameed @laurabrod
3K Followers 3K Following Mom. Wife. Possibilitarian. Activator. Curious by nature, politely sarcastic by nurture. Be kind.
Tracy Murray Stewart,.. @tmurraystewart
107 Followers 353 Following Assistant Professor Researching #Polyamines in Cancer Biology and Rare Diseases @HopkinsMedicine @hopkinskimmel
Crystal Anne @Chrissy9_93
23 Followers 59 Following The idea of things are never the reality of things. Think about what you really want before you go for it.🖤
Marie D.L. • Art Ac.. @r_a_r_e_advoc8
194 Followers 117 Following Dismantling the Ableist Society is kind of my thing • Creator of Chronically Spooky (available on Amazon) • Pridefully Disabled Anti-Ableist Thought Leader
Glencore @Glencore
172K Followers 536 Following We are a global & diversified natural resource company, responsibly sourcing the commodities that advance everyday life.
Fix @FixMoeti
24K Followers 3K Following Years of Radio & TV in Africa | 📍: 🇹🇿🇿🇦@fixscholarship | @AfricanAffirms| Yogi & Surfer🧘🏾♀️🌊//Bookings: [email protected]
Department of Health:.. @COVID_19_ZA
86K Followers 99 Following An official portal for Coronavirus (COVID-19) information by the National Department of Health.Last chance to #Ride4Rare at the upcoming Ride Joburg. Use your mobility to benefit those without it. #RideToCare #Ride4Rare 👉rarediseases.co.za/activists-regi… @rare_aware @rarediseasessa
SADAG is attending the #2ndPresidentialHealthSummit & will be advocating to make #MentalHealthMatter. By joining together with #PatientUserGroups we can include the patient user experience as the priority of health care in SA. @CHOCfoundation @rarediseasessa @campaign4cancer
Calling all PINSA members for a mass infusion. We want to set a world record of the most infusions administered over World PI Week 22-29 April 2023, in creating awareness for people living with Primary Immune deficiencies @ipopi_info @rarediseasessa
Nota just said it all....🥺
#rarediseaseday 2023 How can you support those with rare conditions and congenital disorders? Check out @rarediseaseday @rarediseasessa @rare_aware and @rarediseasesint
@pwc_za Please show us your colours and light up for #RareDiseaseDay in support of @rarediseasessa and #rarediseases 💙 💜 💚 💛
Did you know that paying a medical scheme for the highest/most comprehensive plan does not mean you are fully covered? 🧐Sign our petition and generate change so that you don't find yourself in the position of paying out of pocket. change.org/p/provide-coun… #DearMinisterofHealth
Many in the esports world know @ShazZkL - she has received notification that at the end of August her medical aid will cease to operate & her health expenses no longer covered : cdn.elexion.co.za/HealthSquared2… /1
An update on our #FightForZach efforts! Grateful for our legal team for their commitment to this case, & for the medical team who has stood firm in their support for Zach. Palliative care should not be an option when there is a proven treatment in place! youtube.com/watch?v=3oQZGK…
2089 signatures so far! Please #share and encourage everyone you know to sign our petition here change.org/p/provide-coun… Our patient community will no longer be on the losing end of the legislated complaints process! 👊🏼 #DearMinisterofHealth @rarediseasessa
This #WomensDay, we’re celebrating all the brave women that choose to be living organ donors. 66% of all living kidney donors are female.
Tune into @Radio702 tonight at 20:00 as @kellyrare will be discussing more on our #DearMinisterofHealth campaign with @BraAubrey
Tune in to @POWER987News at 13:00 as @kellyrare will be discussing our #DearMinisterofHealth campaign with @FaithMangope @rarediseasessa
A 56 day reduction in the turnaround time at CMS is a decent START. #DearMinisterofHealth we're watching this space to see what more you're doing to improve the CMS process. Time is of the essence. @HealthZA @kellyrare @rarediseasessa
#DearMinisterofHealth all we ask is that you provide the CMS with the resources to effectively and efficiently fulfil it’s responsibilities to medical scheme members. Is that really too much to ask? @HealthZA @GautengHealth
❗SIGN OUR PETITION❗ This is to benefit ALL South Africans. The aim is to provide people with continuous care to improve their health and well-being and to make healthcare more affordable. Help us get to 2500 signatures. change.org/p/provide-coun… #DearMinisterofHealth
#DearMinisterofHealth your country also needs to you step up. @HealthZA
#DearMinisterofHealth everyone needs equal access to good healthcare...wouldn't you agree? 🤔 @HealthZA
A year ago I made a promise to this family to fight for Zach like I would my own. I will not waiver in that promise. Schemes like @medihelpsa who continuously fail to recognise previous @CMSCares4u rulings into consideration need to be held accountable.
The current complaints process at @CMSCares4u isn’t fit for purpose when it comes to high priced interventions. It is no secret the CMS is under resourced and has limited capacity with the appeals board only meeting bi-monthly. We have a patient who has waited 15 months!
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