Expanding Your Circle of Support
Access specialized equipment suppliers, research opportunities, legal guidance, and community resources that complement your core MND support network.
Beyond the Basics – Comprehensive Support Resources
While our core support services provide the foundation for your MND journey, we understand that you may need access to specialized equipment, cutting-edge research, legal guidance, or community services that extend beyond what we directly provide. This comprehensive resource directory connects you with trusted external partners and valuable information sources.
Every resource listed here has been carefully reviewed to ensure reliability, accessibility, and understanding of the MND community’s unique needs. We continuously update this directory based on community feedback and emerging developments in MND care and support.
Research and Clinical Opportunities
Adapting everyday activities can help maintain independence and quality of life. Our resources include practical advice to help you continue living on your terms.
- Participating in Research
- South African Clinical Trials
- International Research Opportunities
- Reliable Medical Information
Access to cutting-edge research and clinical trials can provide hope and potentially beneficial treatments. Our research directory connects you with legitimate opportunities to participate in MND research both locally and internationally.
The South African Health Products Regulatory Authority (SAHPRA) oversees clinical trials in South Africa, ensuring safety and ethical standards. Local participation in clinical trials can provide access to emerging treatments while contributing to research that benefits the entire MND community.
Key Resources:
- SAHPRA Clinical Trials information and safety guidelines
- South African National Clinical Trials Register for current local studies
- Pan African Clinical Trials Registry for regional research opportunities
Visit SAHPRA Clinical Trials here
South African National Clinical Trials Register (SANCTR): Contact SAHPRA for access
Visit Pan African Clinical Trials Registry (PACTR) here
While traveling for clinical trials may not always be feasible, staying informed about international research helps you understand emerging treatments and discuss options with your healthcare team.
Key Resources:
- ClinicalTrials.gov for comprehensive international research database
- WHO International Clinical Trials Registry for global research oversight
- Specific searches for South African participants in international studies
Visit Clinical Trials.gov here
Visit ClinicalTrials.gov South Africa here
Visit WHO International Clinical Trials Registry here
Access to evidence-based medical information helps you make informed decisions about your care and stay current with MND research developments.
Key Resources:
- PubMed and PubMed Central for peer-reviewed research
- Cochrane Library for systematic reviews and evidence-based medicine
- International Alliance of ALS/MND Associations for global research updates
Research Databases
– PubMed: https://pubmed.ncbi.nlm.nih.gov/
– PubMed Central (PMC): https://pmc.ncbi.nlm.nih.gov/
– Cochrane Library: https://www.cochranelibrary.com/
– Cochrane Reviews: https://www.cochrane.org/evidence
International Health Organizations
– World Health Organization (WHO): https://www.who.int/
– National Institutes of Health (NIH): https://www.nih.gov/health-information
– National Library of Medicine: https://www.nlm.nih.gov/
MND/ALS Specific Resources
– International Alliance of ALS/MND Associations: https://www.als-mnd.org/
– ALS/MND Research Directory: https://www.als-mnd.org/support-for-pals-cals/research/
– MND Association (UK) Clinical Trials: https://www.mndassociation.org/research/clinical-trials/
Specialized MND Care Centers
Major academic hospitals across South Africa provide specialized MND care through dedicated clinics and neurology departments. These centers offer multidisciplinary care approaches and access to the latest treatment protocols.
Western Cape
UCT/Groote Schuur Hospital Neurology Department provides comprehensive MND care including diagnosis, ongoing management, and coordination with rehabilitation services. Their multidisciplinary approach ensures all aspects of MND care are addressed.
Contact: 021 404 9111
Western Cape
Stellenbosch/Tygerberg Hospital operates an MND clinic that focuses on patient-centered care and family support. Their team includes neurologists, respiratory specialists, and allied health professionals experienced in progressive neurological conditions.
Contact: 021 938 9111
Gauteng
Wits/Baragwanath Hospital provides MND clinic services through their neurology department, offering both diagnostic services and ongoing care management. Their location makes specialized care accessible to the greater Johannesburg area.
Contact: 011 933 9111
Communication and Technology Support
Voice banking and communication technology services are available through speech therapy departments at major hospitals. These services help preserve your voice and provide alternative communication options as needs change.
Advanced communication technologies, including eye-tracking systems and speech-generating devices, are available through assistive technology suppliers who can provide demonstrations and training.
Voice Banking and Communication
– Voice Banking Information: Available through speech therapists at major hospitals
– Communication Apps: Research through app stores for AAC (Augmentative and Alternative Communication) apps
– Eye-tracking Technology: Contact assistive technology suppliers for demonstrations
Legal and Financial Guidance
Navigating legal matters related to disability rights, benefits, and care planning requires specialized knowledge. Access to qualified legal professionals can help protect your rights and ensure your wishes are respected.
Legal Aid South Africa provides assistance with disability-related legal matters, including benefits appeals, discrimination cases, and basic legal documentation. Their services are particularly valuable for those who cannot afford private legal representation.
The Equality Court system provides recourse for disability discrimination cases, ensuring that people with MND have legal protection and advocacy when their rights are violated.
Provincial Law Societies can provide referrals to attorneys with experience in disability law, estate planning, and healthcare decision-making. Specialized knowledge in these areas can be crucial for comprehensive legal planning.
Understanding available benefits and financial support options can significantly reduce the financial stress associated with MND care. Professional financial guidance helps ensure you access all available support while planning for future needs.
Research and Medical Information
Evidence-Based Information Sources
Access to reliable, current medical information helps you stay informed about MND research, treatment developments, and care best practices. These resources support informed discussions with your healthcare team.
Peer-Reviewed Research:
PubMed provides access to peer-reviewed medical research from around the world, including the latest studies on MND treatment, management, and quality of life research. The database is freely accessible and includes abstracts for most studies.
PubMed Central offers full-text access to many research articles, providing detailed information about study methods and findings. This resource is particularly valuable for understanding the evidence behind treatment recommendations.
Evidence-Based Medicine
The Cochrane Library provides systematic reviews and evidence-based medicine guidelines specifically relevant to healthcare decision-making. Their reviews synthesize multiple studies to provide clear guidance on treatment effectiveness.
The International Alliance of ALS/MND Associations maintains current information about global research initiatives, treatment guidelines, and advocacy efforts that may benefit the South African MND community.