Sponsors
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PLATINUM SPONSOR |
Rare Diseases International (RDI) is the global alliance of people living with a rare disease of all nationalities across all rare diseases. RDI’s mission is to be a strong common voice on behalf of rare disease patients around the world, to advocate for rare diseases as an international public health priority and to represent its members and enhance their capacities. RDI has more than 90 member organizations from 48 countries, that in turn represent rare disease patient groups in more than 150 countries worldwide.
The Nngwe Project is a ground-breaking initiative by DIPLOMICS that will address the plight of rare disease, and in particular undiagnosed rare disease patients in South Africa. This initiative is funded by the Department of Science and Innovation and will support health goals as outlined in the National Development Plan
2030.
The Nngwe Project calls upon South African clinicians and scientists to unite in the mission of improving care for rare disease patients. While individual efforts by clinicians and scientists have been commendable, a coordinated, collective approach is essential to reshape the destinies of these patients.
Improving health is central to fulfilling the immense potential of the African continent, yet millions of people face obstacles at every step of their health journey. At Roche, we are working toward a future where every African person can access world-class healthcare by contributing to bold solutions that accelerate progress on the sustainable development goals (SDGs) and advance national universal health coverage (UHC) efforts.
Sanofi is committed to improving the lives of patients with rare diseases. With over 7,000 different rare diseases affecting more than 350 million people globally, the need for earlier diagnosis, better disease management, and new treatment options is critical. Only 5% of rare diseases have approved treatments, making continued research and development essential. Sanofi is proud to have one of the largest rare disease pipelines in the industry, focused on expanding beyond lysosomal storage disorders.
Sanofi is dedicated to providing sustainable and transformative healthcare options to enable fulfilling futures for remarkable people, no matter how rare their condition.
#RareDiseases #HealthcareInnovation #PatientCare
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BRONZE SPONSOR |
From our Sub- Saharan Africa headquarters located in Johannesburg, South Africa, for more than 70 years, Pfizer has been delivering life-changing breakthroughs to the people of South Africa.
We work with Healthcare Practitioners, Policy Makers, Patient Groups, and other members of civil society to serve the communities in which we live and work, broadening access to medicines and strengthening healthcare delivery for the people who need it most.
Consistent with our responsibility as one of the world's premier innovative biopharmaceutical companies, we collaborate with health care providers, governments and local communities to support and expand access to reliable, affordable healthcare around the world. For 175 years, we have worked to make a difference for all who rely on us.
Living our values of Courage, Excellence, Equity and Joy, we are a diverse team of about 250 people working daily to provide all South Africans with access to global scientific innovation that can help them to live longer, better lives. Through our commitment to the national agenda, we are contributing to the development of a strong healthcare system, as well as growth of the knowledge economy in the interest of those who need to be empowered to day and to the benefit of the generations to come.
Promolab (Pty) Ltd was founded by Paul Queisser and started trading as SEPERATIONS on 1 September 1989 to serve South African scientists with a highly focused, innovative and synergistic line of chromatography supplies.
The need for this service had been clearly identified by him during his previous involvement as founder and director of Saarchem (Pty) Ltd, South Africa’s first comprehensive laboratory chemicals manufacturer since 1977.
So, with chromatography in his head and passion for his customers in his heart, Paul set out to bring the most complete and high- quality combination of chromatography consumables to South African scientist possible.
Since then, this concept of customer- centric products and exceptional support has continued until today and has been the driving force behind the development of the Sales Division that outline the specific workflows we focus on.
Separations continues to drive innovation and value by always attracting the most cutting-edge and innovation supplies into its portfolio, to deliver spectacular and complete workflow solutions to our discerning customers.
SYNGAP1-related non-syndromic intellectual disability is a rare genetic disorder. The SYNGAP1 gene is located on Chromosome 6 and is responsible for producing the SynGAP protein. A variant of the SYNGAP1 gene leads to the gene not producing enough SynGAP protein. Without the right amount of SynGAP protein we see an increase in excitability in the synapses making it difficult for neurons to communicate effectively. This leads to many neurological issues seen in SynGAP patients.
SYNGAP1 is considered a spectrum disorder since patients are not affected exactly the same way or with the same severity. It is not known what impacts the symptoms or their severity. Symptoms can include Intellectual Disability (mild to severe), Hypotonia, Global Developmental Delay, Epilepsy (eyelid flutters, jerks, staring and drop seizures), Sensory Processing Disorder, Gross and Fine motor skill delays, Dyspraxia, Speech Delay/Apraxia, Autism Spectrum Disorder, and Sleep and Behavior disorders.
Though SRF does not know of any sub-Saharan patients with SYNGAP1, we estimate that there may be up to 1,000+ undiagnosed patients in South Africa alone based on large clinical basket trials of ID/Epilepsy which have utilized genetic testing. It is our hope to raise awareness about SYNGAP1 in Africa so that patients and families can connect with the larger Syngap community as soon as they receive this life-altering diagnosis.
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EXHIBTION SUPPORT GROUPS |
Andreasgift lupus foundation is a patient focus advocacy foundation.
We have identified unmet needs of adults and children with lupus in South Africa including the need for disease-specific patient education, better communication with healthcare workers, and improved community awareness of SLE. We continue to campaign for greater support, resources and interventions for the lupus community while empowering each patient on their journey to self-fulfilment.
Camber Coaching’s focus is to inspire and assist individuals and teams to align and develop their potential in their professional and personal lives. One of their key focus areas is assisting frontline workers deal with compassion fatigue and burnout.
Kim Ballantine is a motivational speaker, business and life coach and author of Hot Tea and Apricots: A Memoir of Loss and Hope.
Nova was started in 2021 when 3 moms identified the need for a school to accommodate their non-verbal children. At Nova we believe that every child has something to say, communication is more than the spoken word and everyone has potential to learn. We offer campus-based learning in Pretoria East and Midstream as well as home-based learning.
Prader-Willi Syndrome (PWS) is a complex genetic condition that affects every aspect of a person’s life. It is most commonly known for the fact that people with PWS become obsessed with food anytime from about 2yrs old onwards. Unless they are strictly managed, they will overeat (known as hyperphagia), become obese and will have a variety of associated medical problems.
However hyperphagia is not the only issue, people with PWS have weak muscles and poor co-ordination, learning difficulties, behavioural issues, OCD behaviours, such as skin picking, cognitive or intellectual impairment, emotional instability, lack of normal sexual development, lack of maturity and often mental health problems as adults.
PWS is caused as a result of a genetic abnormality, information is missing from the paternal chromosome 15. In 99% of cases it is not an inherited disorder and it seems to occur completely randomly.
Our goals are:
1) To raise awareness of PWS and increase understanding of the challenges they face, such as always wanting to eat. If people know this about the person with PWS they will know not to feed them and to keep food out of their sight.
2) Offer support and educate parents on how best to care for people with PWS by providing them with guidance in the form of articles, talks, videos and advice. The website and Facebook page are also sources of information that is updated
3) To improve medical treatment for people with PWS by aiming to improve awareness and knowledge of PWS amongst medical professionals in order to increase the number of babies that are diagnosed so that their families can get support, the correct advice and treatment. In addition we are constantly trying to get approval of Growth Hormone Therapy for PWS in South Africa as it has been approved all over the world.
4) To provide parents with a chat group where they can communicate and share with other parents who have the same experiences and feel less alone in the world.
TELL (Transplant Education for Living Legacies) was established in September 2018 as an NGO and PBO focusing on educating healthcare professionals, and the public on the importance of organ and tissue donation. By shedding light on this critical issue, TELL strives to create a society where every person understands the significance of becoming a living legacy through the gift of donation. They work tirelessly to break down barriers, dispel myths, and provide support to those affected by organ and tissue transplantation.
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TABLETOP DISPLAY EXHIBITORS |
A leading South African based pathology services network providing reference laboratory services to the rest of the world through state-of-the-art technology and diagnostic equipment. Ampath’s infrastructure provides access to advanced knowledge in prediction, treatment and prevention supported by some of the most respected Pathologists in South Africa.
Inqaba Biotechnical Industries (Pty) Ltd, trading as inqaba biotec™ in Sub-Saharan Africa is a unique South African Genomics company that was established in 2002. The company premises are based in Muckleneuk, Pretoria with subsidiaries in both East and West Africa. Our in-house services include Bioinformatics support, oligonucleotides/probes synthesis, SNP & Methylation analysis, Phylogenetic & Molecular techniques courses as well as Sanger and NGS sequencing including human genomes on PacBio systems,. We are also distributors of strong leading international manufacturers of life-science and diagnostics reagents
