Takeda puts the spotlight on rare diseases in a unique public awareness drive

• The ‘I am Number 15’ campaign takes its name from the fact that one in 15 South Africans suffer from a rare disease.
•  A joint venture between Takeda and Rare Diseases South Africa (RDSA), the initiative is aimed at driving awareness for patients with notably  four rare diseases; Hereditary angioedema, Gaucher, Fabry and Primary Immunodeficiency – the lack of which often leads to misdiagnosis and subsequently improper medical care or no treatment at all.
• Hereditary angioedema is a rare disorder identified by episodes of swelling under the skin, gut lining, and the lungs.
•  Gaucher disease is an inherited genetic disorder. It causes bone pain, anemia, enlarged organs, a swollen, painful belly and bruising and bleeding problems.
•    Fabry disease is a rare genetic disease with a deficiency of an enzyme called alpha-galactosidase A. Symptoms of Fabry disease may include pain, burning in the hands and feet, and vision problems. 
•  Many people with primary immunodeficiency are born missing some of the body’s immune defenses or with the immune system not working properly, which leaves them more susceptible to germs that can cause infections.

Research and development driven global biopharmaceutical company, Takeda has partnered with non-profit organisation Rare Diseases South Africa (RDSA), for the launch of a unique, new campaign aptly called ‘I am number 15’, officially launched in SA on Thursday, June 9.

The initiative seeks to drive awareness of and improve patient outcomes for people 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.

Announcing the launch, Ursula Myles, General Manager of Takeda’s Access Market Cluster said a high-level team of world-class researchers are currently 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,” Myles said, adding that the campaign 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 four 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 the new public awareness campaign, 15 ‘Rare Disease Warriors’ will each have their portraits painted by an artist.

“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 Hildav 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,” explains RDSA founder and CEO 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 6,000 and 7,000 identified rare diseases affecting more than 300 million people across the globe. In South Africa alone, an approximately 3,7 million people are battling a rare disease. Rare diseases are characterised 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, while 30% will sadly die before their fifth birthday.

For more information about Rare Disease South Africa visit rarediseases.co.za.