Novartis has recently developed two new resources for the community in conjunction with Rare Disease Day. They based these new programs on the adopted theme, “Rare Diseases, Loud Voices”, amplifying the voices of rare disease communities and demonstrating Novartis’ support and celebration for patients, families and caregivers impacted by and living with a rare disease.
- “How Common are Rare Diseases?” Infographic– Showcases the scope/burden of rare diseases by creatively contextualizing them against pop culture analogies and statistics. The infographic can be viewed on the Rare Disease board of the Novartis Pinterest page.
- “Rare Diseases, Loud Voices”Animated Whiteboard Video – Provides an overview of the rare disease patient journey and landscape, including several insights gleaned from the EURODIS rare disease patient survey; the video also reflects on Novartis’ long history and commitment to supporting rare diseases. The video can be accessed on the Novartis YouTube page.
Furthermore, Novartis has continued to create content for its TSC Road to the Special Olympic Tumblr which profiles the journey for patients with insight from the rare community.
To raise awareness about Tuberous sclerosis complex, Novartis Pharmaceuticals Corporation is following Special Olympics athletes with TSC on their journeys to compete in local, State and National Games. We will be sharing updates about their participation and preparation for the Games, while they actively live with and manage the challenges of TSC. In addition, we will highlight available TSC educational resources and information on topics important to the TSC community, such as TSC Centers of Excellence and monitoring and screening tumors.