Takeda, the R&D-driven global biopharmaceutical company, in partnership with non-profit organization Rare Diseases South Africa (RDSA), today announced the launch of the ‘I am number 15’ campaign.
The initiative seeks to drive awareness of and improve patient outcomes for patients suffering from a rare disease in line with Takeda’s global mission to deliver better health and a brighter future for all. It takes its name from the fact that 1 in 15 South Africans is diagnosed with such a condition.
Ursula Myles, General Manager Access Markets commenting on the launch, said, “As part of our commitment to deliver better health to all, at Takeda, our world-class research and development teams are working to advance the treatment of rare diseases in immunology, hematology and rare metabolic disorders. Unfortunately, many patients with a rare disease suffer the additional burden of delayed and misdiagnosis, which often leads to delayed treatment. ‘I am number 15’ seeks to address persistent and long-standing barriers that contribute to an ongoing cycle of missed or delayed diagnosis and treatment, and thereby fundamentally improve patient outcomes.”
‘I am number 15’ will specifically raise awareness of rare diseases Hereditary angioedema (HAE), Gaucher, Fabry and Primary immunodeficiency (PID). As part of the campaign, a series of educational activities will be conducted for the medical community to support improvements in rare disease diagnostics and management. In a public awareness campaign, 15 ‘Rare Disease Warriors’ will each have their portraits painted by an artist and featured as part of the campaign.
“Due to the nature of rare diseases, the medical community often faces challenges in treating patients due to a lack of clinical data, particularly in South Africa where there is no record keeping of rare disease incidence, prevalence or treatment. With ‘I am number 15’, at Takeda, we hope to leverage our expertise in rare diseases to drive awareness among medical professionals, patients and the wider stakeholder community to promote the importance of timely genetic screenings and specialized disease treatment. In doing so, we hope to improve the patient journey and clinical outcomes,” added Hilda Mcloughlin, Medical Affairs Head SA and SSA.
“While referred to as ‘rare’ diseases, one in fifteen South Africans is not a rare occurrence when bundled together. With millions of patients impacted, many of them children, we need more awareness, understanding and support for the ongoing research efforts crucial for saving lives,” said Founder and CEO of Rare Diseases South Africa (RDSA), Kelly Du Plessis.
“For this to happen, we require the medical community to be informed and educated and have the appropriate diagnostics and management that is required across the patient journey. Moreover, the engagement of the patient community and their caregivers is also vital. Takeda’s support for the ‘I am number 15’ campaign will be crucial to this objective,” she added.
There are between 6,0001 and 7,0002 identified rare diseases affecting more than 300 million people across the globe3. In South Africa, there are approximately 3.7 million rare disease patients4. Rare diseases are characterized by a broad diversity of disorders and symptoms that vary both from disease to disease and often from patient-to-patient suffering from the same condition. Relatively common symptoms can hide underlying rare diseases, leading to misdiagnosis and delayed treatment. Of rare disease patients, 70% experience their first symptoms during childhood,5 while 30% will sadly die before their fifth birthday6.
