Raising a Hand for the Rare Disease Community
Raising a Hand for the Rare Disease Community
Approximately 1 in 10 Americans are living with a rare disease,[1] which is defined as a condition that affects fewer than 200,000 people in the U.S.[2]
Collectively, more people are living with a rare disease than those diagnosed with breast, skin and lung cancer combined.[3],[4],[5]
Due to the nature of a rare disease, patients often encounter challenges in getting diagnosed, getting treated or getting access to investigational therapies and clinical trials, due in part to the lack of information and resources that exist for their conditions. Because the diseases they face are so rare and misunderstood, these patients are also often stigmatized and marginalized, contributing to a sense of isolation and hopelessness.
Two organizations, EURORDIS (Rare Diseases Europe) and NORD (the National Organization for Rare Disorders), committed to addressing these challenges by raising critical awareness and advocating for health equity for everyone facing a rare disease. As part of this, the organizations established Rare Disease Day, which is recognized on the last day in February each year.
At Daiichi Sankyo, we are committed to doing our part — on Rare Disease Day, and every day — to change these realities for the rare disease community by:
- Amplifying available resources to help inform the journey from diagnosis to treatment.
- Leveraging best-in-class science to find new therapeutic options for patients with rare cancers and a range of other rare conditions.
- Designing clinical trials that can be more easily accessed by patients with rare diseases.
- Banding together and raising our hands to show the world that we are a proud part of the global rare disease community, and that these patients and their loved ones are never alone.
This Rare Disease Day, we hope you will join us in supporting the millions of people across the rare disease community by raising awareness of the resources, programs and support available at rarediseaseday.org.
PP-US-ON-1581
02/22
[1] NORD (National Organization for Rare Disorders). Get Involved. 35 Years and Growing. Available at: https://rarediseases.org/get-involved/donate-now/give/35-years-growing/#:~:text=35%20Years%20and%20Growing%20%2D%20NORD%20(National%20Organization%20for%20Rare%20Disorders)&text=There%20are%2030%20million%20Americans,of%20patients%20with%20rare%20diseases. Last Accessed February 2022.
[2] National Institutes of Health. Diseases. FAQs About Rare Diseases. Available at: https://rarediseases.info.nih.gov/diseases/pages/31/faqs-about-rare-diseases. Last Accessed February 2022.
[3] American Lung Association. Lung Health & Diseases. Lung Cancer Fact Sheet. Available at: https://www.lung.org/lung-health-diseases/lung-disease-lookup/lung-cancer/resource-library/lung-cancer-fact-sheet#:~:text=Approximately%20541%2C000%20Americans%20living%20today,some%20point%20in%20their%20lives.&text=During%202018%2C%20an%20estimated%20234%2C030,percent%20of%20all%20cancer%20diagnoses. Last Accessed February 2022.
[4] American Academy of Dermatology Association. Skin Cancer. Available at: https://www.aad.org/media/stats-skin-cancer#:~:text=It%20is%20estimated%20that%20approximately,with%20skin%20cancer%20every%20day.&text=Research%20estimates%20that%20nonmelanoma%20skin,3%20million%20Americans%20a%20year. Last Accessed February 2022.
[5] Cancer.net. Breast Cancer: Statistics. Available at: https://www.cancer.net/cancer-types/breast-cancer/statistics#:~:text=Currently%2C%20there%20are%20more%20than,breast%20cancer%20are%20an%20estimate. Last Accessed February 2022.
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