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Takeda’s focus on health equity: Rare Disease Day 2023 | Takeda Stories

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Takeda’s focus on health equity: Rare Disease Day 2023

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February 24, 2023

Standing with the rare disease community, our mission is to bring better health and a brighter future, no matter of circumstance or situation.

We are proud to be part of the global movement that is #RareDiseaseDay. This unique awareness day is curated annually by EURORDIS (Rare Diseases Europe) and its council of over 65 National Alliances as a focal point to engage and enable rare disease advocacy work around the world1. It’s a special time to unite the community to recognize and support the more than 300 million patients, their families, friends and caregivers who are impacted by one of more than 7,000 rare diseases2,3.

This year our ambition is to reduce burdens faced by people living with a rare disease, especially those at greatest risk of poor health due to their social or economic situation, access to healthcare or other societal factors.

As we aspire to achieve optimal health outcomes for everyone, we must work tirelessly and openly with the rare disease community. We must challenge unfair and avoidable differences in health across the globe and between different groups within society. We must identify and overcome these biases. Only then can we make health equity a reality.

Starting with a timely and accurate diagnosis


The rare disease community is negatively and disproportionately affected by a lack of disease awareness4. People living with a rare disease and their support networks can experience challenges in accessing the expert support and care they need5,7.

One of the greatest challenges for people living with a rare disease is the long diagnostic journey6,7,8. On average, it takes four to five years for a person with a rare disease to receive an accurate diagnosis6,11. For some people it can take more than a decade to be accurately diagnosed9, and for many an accurate diagnosis is never found6,11.

These challenges can be particularly felt by those living with a rare disease and facing health inequities, who may experience even further delays in diagnosis and care.10

Our commitment to act


We have never been more determined to seek out and break down barriers faced by the rare disease community. With our continued focus on those with the greatest unmet needs facing health inequity, we are committed to identifying and bridging gaps in care, so that one day everyone may hopefully achieve optimal health, starting with access to a timely and accurate diagnosis.

Here are a few examples of projects we are proudly currently working on to improve the diagnostic experience and to drive health equity for people living with rare diseases.

Standing with the rare disease community


The passion, drive and dedication of the rare disease community is a constant inspiration. A shining recent example of community collective success was the adoption of the UN Resolution on “Addressing the Challenges of Persons Living with a Rare Disease and their Families.”Go to https://www.rarediseasesinternational.org/un-resolution11

This first UN document to recognize people living with rare disease that called on the UN and member states to take action and address the challenges faced by the rare disease community is ground-breaking. We fully support this resolution as an important step towards global recognition and greater visibility for the community.

How you can get involved



References


  1. Rare Disease Day. What is rare disease day? [Internet; cited February 2023]. Available from: https://www.rarediseaseday.org/what-is-rare-disease-day/Go to https://www.rarediseaseday.org/what-is-rare-disease-day/

  2. Nguengang Wakap, S., Lambert, D.M., Olry, A. et al. Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database. Eur J Hum Genet 28, 165–173 (2020)

  3. Orphanet. New scientific paper confirms 300 million people living with a rare disease worldwide. [Internet; cited February 2023]. Available from: https://download2.eurordis.org/pressreleases/PrevalencePaper_JointStatement_170919_Final.pdfGo to https://download2.eurordis.org/pressreleases/PrevalencePaper_JointStatement_170919_Final.pdf

  4. Rare Diseases. Barriers to rare disease diagnosis, care and treatment in the US: A 30-Year Comparative Analysis [Internet; cited February 2023]. Available from https://rarediseases.org/wp-content/uploads/2022/10/NRD-2088-Barriers-30-Yr-Survey-Report_FNL-2.pdfGo to https://rarediseases.org/wp-content/uploads/2022/10/NRD-2088-Barriers-30-Yr-Survey-Report_FNL-2.pdf.

  5. Chung CCY; Hong Kong Genome Project; Chu ATW, Chung BHY. Rare disease emerging as a global public health priority. Front Public Health. 2022 Oct 18;10:1028545. doi: 10.3389/fpubh.2022.1028545. PMID: 36339196; PMCID: PMC9632971.

  6. Rare Diseases International. Diagnosis. [internet; cited February 2023]. Available from: https://www.rarediseasesinternational.org/diagnosis/Go to https://www.rarediseasesinternational.org/diagnosis/

  7. James K. Stoller. The challenge of Rare Diseases. Chest Journal, 153(6):1390-14 (2018)

  8. World Economic Forum. It takes far too long for a rare disease to be diagnosed. Here’s how that can change. [internet; cited February 2023]. Available from: https://www.weforum.org/agenda/2020/02/it-takes-far-too-long-for-a-rare-disease-to-be-diagnosed-heres-how-that-can-change/#:~:text=The%20long%20road%20to%20diagnosis,as%20well%20as%20disease%20progressionGo to https://www.weforum.org/agenda/2020/02/it-takes-far-too-long-for-a-rare-disease-to-be-diagnosed-heres-how-that-can-change/#:~:text=The%20long%20road%20to%20diagnosis,as%20well%20as%20disease%20progression

  9. Marwaha, S., Knowles, J.W. & Ashley, E.A. A guide for the diagnosis of rare and undiagnosed disease: beyond the exome. Genome Med 14, 23 (2022)

  10. Rare Diseases International. Health Equity and Access. [internet; cited February 2023]. Available from: https://www.rarediseasesinternational.org/health-equity/Go to https://www.rarediseasesinternational.org/health-equity/

  11. Rare Diseases International. UN Resolution on persons living with a rare disease [internet; cited February 2023]. Available from: https://www.rarediseasesinternational.org/un-resolution/Go to https://www.rarediseasesinternational.org/un-resolution/