Danielle Ribeiro from Great.com interviewed Rare Diseases South Africa (RDSA) as part of their 'Great.com Talks With...' podcast. This series was an antidote to negative news stories and aimed to shed light on organizations and experts whose work was positively impacting the world.
Rare Diseases South Africa (RDSA) had been at the forefront of advocating for individuals living with rare diseases and genetic disorders. The organization was committed to improving the quality of life for these individuals and their families through comprehensive support and resources. By raising awareness and promoting research, RDSA worked tirelessly to ensure that no one affected by rare diseases was left behind.
Nomsa Mitshali, the Patient Community and Rare Assist Manager at Rare Diseases South Africa, talked with Great.com about how their efforts aimed to ensure that rare diseases were recognized as a public health priority, increasing funding for research and fostering a better understanding of the patient's needs.
One of RDSA’s core missions was advocacy. The organization engaged with policymakers, healthcare providers, and the public to ensure that rare diseases were recognized as a public health priority. This included pushing for better healthcare policies, securing funding for research, and increasing access to necessary medical care. Through persistent advocacy efforts, RDSA aimed to influence systemic changes that would benefit the rare disease community in the long run.
In addition to advocacy, RDSA provided direct support to patients and their families. The organization offered a range of services, including counseling, detailed information on specific rare diseases, and assistance with navigating the healthcare system. These resources were crucial for helping families understand and manage their conditions, ultimately improving their quality of life. RDSA’s support services were designed to address the unique challenges faced by the rare disease community, offering a lifeline to those in need.
Awareness campaigns were another vital aspect of RDSA’s work. By organizing events, participating in media outreach, and leveraging social media platforms, RDSA strove to educate the public about the challenges faced by individuals with rare diseases. These efforts helped to foster a more inclusive society where the needs of all individuals, regardless of their health conditions, were understood and respected.
In addition to advocacy and awareness, RDSA strongly emphasized fostering community among those affected by rare diseases. Through support groups, educational workshops, and community events, the organization created a network of support and solidarity. This sense of community was invaluable for individuals and families coping with the challenges of rare diseases, providing them with a platform to share experiences, advice, and encouragement.
RDSA was also deeply committed to advancing research and innovation in the field of rare diseases. The organization collaborated with researchers, medical professionals, and institutions to promote and support studies that aimed to find new treatments and cures. By facilitating partnerships and providing funding, RDSA played a crucial role in the quest for scientific breakthroughs that could significantly improve the lives of those affected by rare diseases.
Research initiatives supported by RDSA were diverse, ranging from genetic studies to clinical trials. These efforts were essential in expanding the understanding of rare diseases and developing effective therapies. By driving research and innovation, RDSA ensured that the quest for better treatments and potential cures remained a top priority.
Great.com was an organization aimed at solving the world’s most dire problem — global climate change. Starting in New Jersey, their mission was to take money from an otherwise harmful and greedy industry (online casinos) and move it towards a positive and good cause (solving the climate crisis). In addition to directly donating 100% of the revenue they earned in the casino industry, they also launched and managed fundraising campaigns to persuade casino entrepreneurs to donate. So far, they had generated over $2 million for climate research through their own donations and proceeds from their fundraising initiatives.
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