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Rare Diseases South Africa and Takeda Pharmaceuticals join hands to support and raise awareness on rare diseases

Four rare disease patients shared their stories on how they keep going after hearing their diagnosis in the launch of the I Am 15 Campaign.

A new campaign to give a voice to those suffering from rare diseases was launched on June 9, with two organisations at the forefront.

Non-profit organisation Rare Diseases South Africa (RDSA) and Fourways-based Takeda Pharmaceuticals have launched the I Am 15 campaign, which is named due to the fact that one in 15 South Africans is diagnosed with a rare condition, according to an article written by Helen Malherbe.
Malherbe is a senior post-doctoral research fellow in the Department of Biochemistry, Genetics and Microbiology at the University of Pretoria.

Takeda Pharmaceuticals general manager, Ursula Myles speaks on the involvement of the comapny with Rare Diseases South Africa at the I Am 15 campaign launch. Photo: Khomotso Makgabutlane

The campaign seeks to drive and raise awareness of and improve patient outcomes for patients suffering from a rare disease. Takeda Pharmaceuticals has the global mission to deliver better health and a brighter future for all who need, which brought forth the partnership with RDSA.

Nico Nel who suffers from Fabry disease speaks about his experiences. Photo: Khomotso Makgabutlane

Anchor of Morning Live Leanne Manas facilitated the launch and dialogue of the morning’s events, as discussions were held with a number of attendees who had been diagnosed with rare conditions such as Gaucher, Fabry disease, primary immunodeficiency and hereditary angioedema.

Marketing and communications of Rare Diseases South Africa, Missy Hayes, Nico Nel who is diagnosed with Fabry disease and founder and CEO of Rare Diseases South Africa Kelly du Plessis at the launch of the I Am 15 campaign. Photo: Khomotso Makgabutlane

The sufferers got to share their experiences on how they managed everyday life and prior to their diagnosis.

Founder and CEO of RDSA Kelly du Plessis said the biggest takeaway from the launch of the campaign was to raise awareness on the various rare diseases many individuals suffered from.

“If you collectively put all the rare conditions together, globally it impacts more than 350 million people, which is a significant part of global population. The overall accumulative if you put them together would be one in 15 South Africans. That is one person in every rugby team.

“Stigma is still a massive barrier when it comes to rare diseases and it happens whether we like it or we don’t. Very often even where there are no visible signs of illness, those people still feel the stigma in the workplace and in school. It makes you unique, and unique separates you,” she said.

Hereditary Angioedema Foundation founder, Janice Strydom chats more on her condition with media personality Leanne Manas. Photo: Khomotso Makgabutlane

Ursula Myles, general manager of Takeda Pharmaceuticals said, “The partnership is not about what we can get out of it, but how we can improve the outcome for the patient. Many patients with a rare disease suffer the additional burden of delayed and misdiagnosis, which often leads to delayed treatment.

“The campaign 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,” she said.

Hereditary Angioedema Foundation founder, Janice Strydom addresses attendees on her condition. Photo: Khomotso Makgabutlane

Part of the campaign is set to have a series of educational activities conducted for the medical community to support improvements in rare disease diagnostics and management.

The public awareness campaign will have 15 ‘Rare Disease Warriors’ who will have their portraits painted by an artist and featured as part of the campaign.

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