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In a recent groundbreaking national survey – Inequities in the Rare Disease Community The Voices of Diverse Patients and Caregivers – aimed at illuminating the barriers faced by underrepresented patients with rare diseases. This pioneering research involved more than 2,800 participants, revealing critical insights into the challenges of accessing necessary healthcare. These challenges mirror the protocols required for research and clinical trials from location of treatment to economic decisions. One key finding reveals that a staggering 50% of respondents reported feeling overwhelmed by the demands of managing life, care, or caregiving responsibilities. This data point highlights the significant emotional and logistical burdens placed on individuals and families within these communities.

Speakers: Jenifer Waldrop - Executive Director, Rare Disease Diversity Coalition (RDDC) and special guests Nate Milam Histio Ambassador | RDLA Committee Member

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C-Path is an independent, nonprofit established in 2005 as a public-private partnership, in response to the FDA’s Critical Path Initiative. C-Path’s mission is to lead collaborations that advance better treatments for people worldwide. Globally recognized as a pioneer in accelerating drug development, C-Path has established numerous international consortia, programs and initiatives that currently include more than 1,600 scientists and representatives from government and regulatory agencies, academia, patient organizations, disease foundations and pharmaceutical and biotech companies. With dedicated team members located throughout the world, C-Path’s global headquarters is located in Tucson, Arizona and C-Path’s Europe subsidiary is headquartered in Amsterdam, Netherlands. For more information, visit c-path.org.

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Post by Rare Disease Diversity Coalition
November 1, 2024