New Collaboration to Advance Health Equity for Rare Disease Patients

A new partnership has been formed between Global Genes and the Rare Disease Diversity Coalition (RDDC) – created by the Black Women’s Health Imperative – in an effort to increase health equity for rare disease patients, their caregivers, and those close to them. This effort is focused specifically on communities of color, who have historically been underrepresented within the healthcare sphere. Combine this with the lack of awareness and resources allocated to rare disease patients, and you see intense inequity.

To combat this problem, these two organizations are teaming up on three projects.

Projects to Advance Equity

The first project that Global Genes and the RDDC are teaming up on will be held next month, from November 17th to the 19th. They will join together to host the RARE Health Equity Summit in Philadelphia which will focus on:

  • How to decrease the levels of racial disparities within the healthcare sphere
  • How to increase inclusivity within research programs, especially as minorities are extremely underrepresented in medical research
  • The obstacles that underrepresented communities face when trying to receive their diagnosis

In order to best discuss these topics, the two organizations will gather stakeholders from the rare disease community.

The second project is titled the RARE Data & Evidence Inclusiveness Initiative. It will focus specifically on the inclusion of racial minorities within the rare disease sphere, especially their experiences. Through data-gathering and sharing, Global Genes and the RDDC will strive to understand how rare disease patients of color experience diagnosis, treatment, and care. As time passes, they hope to observe trends and improvements in these experiences.

The third and final project is named Know Your Family History Initiative. As genetics and family history play a large role in many rare diseases, awareness of one’s family medical history is extremely important. As receiving a diagnosis is typically a long, tiring process for rare disease patients, this project aims to help lessen the burden that comes along with it. It will do so by collecting data, engaging patients, and educating the public. In the end, this initiative aims to increase access to proper diagnoses, research, and care for minority patients.

Looking Forward

Inequity has always existed within the healthcare sphere, and it continues to persist today. Patients of color are underrepresented in research, leading to issues with diagnosis and treatment. These projects aim to address this problem, hopefully lessening the burden faced by rare disease patients of color.

Find the source article here.

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