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Recognizing Resilience: Rare Stars in a Rare Year

Join us in celebrating the resilience of the rare disease community

This February 28th, Takeda is excited to participate in Rare Disease Day 2021. Celebrated annually and spearheaded by EURORDIS (Rare Diseases Europe) and its council of National Alliances, this day of celebration raises awareness of rare diseases and conditions and those who give invaluable contributions to the rare disease community.

Around the world, more than 300 million patients, families, friends and carers are impacted by one of more than 6,000 rare diseases.1,2 According to EURORDIS, 1 in every 20 people are affected by rare diseases – meaning you may know someone impacted by one of these little-known conditions.2

Last year, we joined patient advocacy groups in “reframing rare.” Takeda celebrated Rare Disease Day by bringing to life the stories of “Rare Stars” and celebrating their unique strengths and collective brightness. This year, we are excited to join these groups in bringing more equitable access to diagnosis, treatment, care and social opportunity. Takeda will shine a light on the unique resilience of the rare disease community – the patients, families, caregivers, healthcare professionals and communities who create meaningful change.

As Mary Uhlenhopp, Global Head of Patient Advocacy, shares: “this past year has been extraordinary in many ways; but people living with rare diseases as well as many of the patient organizations that aim to serve them, have shown great strength and resiliency against all odds.

RareStars

This year, we are shining a light on those impacted by rare diseases and honoring their dedicated contributions to the community and unwaivering tenacity in the face of challenges.”

Around Rare Disease Day, Takeda will revisit and spotlight a selection of “Rare Stars” to raise awareness of rare diseases and to amplify the voices of this inspirational community. We will share their stories here and across social media to honor their contributions and resilience, while also illustrating how their light was never dimmed, even during a year made more difficult by the COVID-19 pandemic.

Patient Stories


Takeda is a global innovator in rare disease management with over 30 years of leadership history in rare diseases. Rooted in our distinguished 240-year history in Japan, we know that every patient counts. We aspire to transform the treatment of rare diseases in Immunology, Hematology, Metabolic and Lysosomal Storage Disorders. With 1 in 20 people affected by a rare disease, we are passionate about developing life-changing treatments for these patients.

To support this initiative, celebrate the rare disease community, and follow these inspiring stories from “Rare Stars” around the world, please connect with us on our corporate social media channels – Twitter, LinkedIn and YouTube.

Rare is strong. Rare is proud. Rare is many. Rare is resilient. Together, we can work toward more equitable access to diagnosis, treatment, care and social opportunity for every patient living with a rare disease.


References:

  1. Nguengang Wakap S, Lambert D M, Olry A, Rodwell C, Gueydan C, Lanneau V, Murphy D, Le Cam Y, Rath A. Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database. European Journal of Human Genetics, 2019.

  2. Rare Disease Day Information Pack. EURORDIS Rare Disease Day Website. http://download2.rarediseaseday.org/2020/infopack-2020.pdf. Accessed on December 9, 2019.