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Monday 08:30 - 16:00 Tuesday 08:30 - 16:00 Wednesday 08:30 - 16:00 Thursday 08:30 - 16:00 Friday 08:30 - 14:00

Rare Research South Africa

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Rare Research South Africa

This is the Rare Diseases South Africa NPO 120-991 Research Project. Rare Diseases South Africa is a registered NPO, and Public Benefit Organization.

Previously Genetic Alliance South Africa, we now form part of Rare Diseases South Africa NPO 120-991. We aim to ensure that all rare disease patients receive access to treatment and supportive care for improved quality of life. We have various online groups which can assist and benefit our patients:
Rare Diseases SA Support group:
This group aims to provide a secure, open platform where rare disease patients can ask questions/ give and gain support and generally just communicate with other rare disease patients. https://www.facebook.com/groups/326602834153888/?fref=ts

Conversations for caregivers:
This group has been created for Caregivers of rare disease patients. This group is a closed group and therefore only members can see post, which makes it an open place to share your stories. https://www.facebook.com/groups/1433357163499090/?fref=ts

Mothers of Bereaved Angels: This group is for bereaved mothers who have lost children to a rare condition. It is intended to function as a peer support group and provide moms with a safe platform to express their feelings and emotions. https://www.facebook.com/groups/262905480543465/?fref=ts

Swop Shop for Special Needs Items:
This page is for people trying to source special needs equipment. New/Second hand items can be advertised/sold/communicated on this page. https://www.facebook.com/groups/1399956500242406/

24/05/2025

The Resolution for Rare Diseases has been accepted at the WHA78 in Geneva

https://www.rarediseases.co.za/post/undefined

26/11/2024

Exciting Opportunity🔬

The Sydney Brenner Institute for Molecular Bioscience at The University of the Witwatersrand in Johannesburg is looking for a dynamic, mid-career professor to join their team as a Research Chair in Precision Medicine and Genomics in Africa. This 5-year renewable position offers an excellent start-up package and additional enabling funding. Applications close 15 January 2025.

For more information, pop us a message in the chat.

Send a message to learn more

12/11/2024

Last chance to register for our webinar on the South African 110 000 Human Genomes Project, presented by Ms. Rizwana Mia. Join us for an insightful presentation on this groundbreaking project and its potential impact. Register now to be part of the conversation.

Event details:
Date: 13 November 2024
Time: 11 am – 12 pm SAST
Cost: R100 (Non-members)

Register here: https://www.rarediseases.co.za/event-details/the-south-african-110-000-human-genomes-project

30/10/2024

Don't miss out! Register for our November webinar to explore the groundbreaking South African 110,000 Human Genomes Project—an initiative set to transform the genomic landscape in South Africa.

Event details:

Date: 13 November 2024

Time: 11 am – 12 pm SAST

Cost: R100 (Non-members)

Register here: https://www.rarediseases.co.za/event-details/the-south-african-110-000-human-genomes-project

23/10/2024

🔬PhD Opportunity Alert🔬

The Division of Human Genetics, based in the School of Pathology, Faculty of Health Sciences at the University of the Witwatersrand/ National Health Laboratory Service, is looking for a qualified candidate to undertake a PhD project on Brown Oculocutaneous Albinism (BOCA).

Application closing date: 8 October 2024

Don't miss out on this opportunity to contribute to groundbreaking research! For more details pop us a message in the chat.

Send a message to learn more

26/09/2024

The Annual ISPOR South Africa Conference is taking place from 21-22 October 2024 in Sandton. Join policymakers, stakeholders, funders, researchers, academics and healthcare providers as they discuss this year's theme: 'Accessible and Affordable Healthcare for Everyone.'

With engaging discussions, expert speakers and networking opportunities this is a must-attend event for anyone passionate about improving healthcare.

Registration fees:
• Members: R4750
• Non-Members: R7000
• Students: R2000

Register now: https://form.jotform.com/241864016374558

19/09/2024

The University of Cape Town and the National Health Laboratory Service, invites applications for a permanent position as a Professor/Associate Professor and Head of the Division of Human Genetics, Department of Pathology.

Closing date: 13th October.

For details on job requirements and the application process, pop us a message in the chat or leave a comment below.

Send a message to learn more

04/09/2024

Registration for the Human Genome Meeting 2025 is now open!

HGM2025 will be held in Durban, South Africa, from March 11-14, 2025. The meeting will feature a wide range of scientific sessions on pharmacogenomics, epigenetics, environmental genomics, discussions on ethical, legal, and social implications, and much more. There will also be a trainee symposium day for students, post-docs, and early career researchers. Don’t miss out on this exciting opportunity!

Register here: https://hugo-hgm2025.org/registration/

23/08/2024

DIPLOMICS is hiring!

They have two new positions available and are looking for a Bioinformatician and a Genomics Project and Data Manager to join their team at their headquarters in Woodstock, Cape Town.

📅 Application Deadline: 30 August 2024

For more information, please send us a message in the chat or leave a comment below, and we’ll provide you with all the details you need.

Send a message to learn more

20/08/2024

We are pleased to announce the publication of a new peer-reviewed article titled “Patient Organizations: Advocating for Timely Newborn Screening & Improved Quality of Life” in a special edition of the Rare Diseases and Orphan Drugs Journal, co-authored by our Director of Research. This work highlights the crucial role several patient organizations have played in advocating for newborn screening to raise awareness of rare diseases.

The special edition also features “Current Status of Newborn Bloodspot Screening Worldwide 2024” and “Newborn Screening in South Africa: The Past, Present, and Future,” both of which emphasize the importance of newborn screening.

At Rare Diseases South Africa, we are committed to supporting people living with rare diseases through advocacy, engagement, navigation, and research. These publications represent significant steps toward our mission to make a meaningful impact and help build the evidence-base for our advocacy efforts.

Read the full articles here: https://www.oaepublish.com/specials/rdodj.1270

14/08/2024

Next Biosciences is hiring!✨

They are looking for a dedicated Medical Scientist or Technologist to perform routine and non-routine technical tasks; specimen receipt and processing and conducting of tests in the Genetics Laboratory.

Closing Date: 26th August 2024

Interested? Drop us a message in the chat and we'll provide you with all the details you need.

Send a message to learn more

19/07/2024

Tune in for an insightful webinar hosted by The Sub-Saharan Congenital Anomalies Network & The Global Health Network on Congenital Infections Associated with Congenital Anomalies in sub-Saharan Africa.

Date: 25 July 2024
Time: 15:00 SAST
Platform: Zoom

To register, please follow this link: https://zoom.us/webinar/register/6617170825098/WN_dNeRpcbBQG6X_ru70YUqzw

Don't miss out on this opportunity to expand your knowledge and contribute to improving healthcare in the region.

Address

The Station Bryanston, 63 Peter Place, Bryanston, Sandton
Johannesburg
2021

Opening Hours

Monday	08:30 - 16:00
Tuesday	08:30 - 16:00
Wednesday	08:30 - 16:00
Thursday	08:30 - 16:00
Friday	08:30 - 14:00

Telephone

+27105943844

Website

http://www.rarediseases.co.za/

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