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Reduce time to diagnosis, improve access to care

Takeda is committed to activating meaningful change for the rare disease community. We strive to improve the standard of care and break down barriers faced by all people living with rare diseases, starting with a timely and accurate diagnosis. Many people with rare diseases experience a prolonged diagnostic journey, which can be further complicated for diverse populations impacted by health inequities.1,2,3 We’ve partnered with the rare disease community, including the National Organization for Rare Disorders (NORD), to explore high-impact opportunities to accelerate the diagnostic journey, advance health equity and create a brighter future for the rare disease community.

Insights and recommendations to improve the diagnostic journey

October 16, 2023

Aimed at uplifting and empowering the rare disease community, Takeda and NORD are working together to bridge gaps in care and improve health outcomes for people with rare diseases, especially those living in marginalized and underserved communities.

As detailed in the report, titled “In Pursuit of Health Equity for the Rare Disease Community: Insights and Recommendations to Improve the Diagnostic Journey,” there is a shared commitment by Takeda and NORD to:

  1. Increase equitable access to genomic sequencing
  2. Expand support for and access to centralized and specialized rare disease care
  3. Reduce barriers to research participation and improve the data landscape for a diverse rare disease population
  4. Invest in accessible and culturally relevant rare disease resources for patients

This paper was informed by an expert panel roundtable discussion hosted in February, 2023 with leaders from across the rare community. This research aims to continue inspiring ongoing dialogue and collaboration among all stakeholders who play a role in the lives of individuals with a rare disease.

To download and read the whitepaper, CLICK HERE.

To hear about our collective efforts with industry advocates and experts, CLICK HEREto view our video series featuring perspectives from roundtable participants.

November 4, 2021

Takeda announced three priority policy reforms and recommendations designed to address significant barriers to care for patients managing rare diseases and genetic conditions as part of a report in November 2021, “Reducing Time to Diagnosis for People Living with Rare Diseases: A Conversation on U.S. Policy Opportunities.”

The proposed policy solutions, which reflect insights and perspectives from leaders and experts at Amyloidosis Research Consortium (ARC), EveryLife Foundation for Rare Diseases (EveryLife), National Organization for Rare Disorders (NORD) and Parent Project Muscular Dystrophy (PPMD), are designed to address persistent and long-standing barriers that contribute to an ongoing cycle of missed or delayed diagnosis and treatment for patients. The policy recommendations reinforce an urgent need to broadly engage patients on the importance of timely genetic screenings, specialized disease care and treatment as well as clinical data coordination.

To download and read the whitepaper, CLICK HERE.


1. About Us. EveryLife Foundation for Rare Diseases. Accessed August 30, 2023, https://everylifefoundation.org/about-us/

2. Bogart KR, Irvin VL. Health-related quality of life among adults with diverse rare disorders. Orphanet J Rare Dis. 2017;12(1):177. doi:10.1186/s13023-017-0730-1

3. Disparities in Public Health Challenges to Diversity in Rare Diseases. EveryLife Foundation for Rare Diseases. [Internet; cited September 2023]. https://everylifefoundation.org/rare-advocates/rare-diversity-hub/disparities-in-public-health