Rare Disease Diversity Coalition

Non-profit Organizations • United States • 1-10 Employees

Company overview

Headquarters	United States
Phone number	+18888348451
Websites	rarediseasediversity.org bwhi.org
NAICS	813
Employees	1-10
Socials

Key Contact at Rare Disease Diversity Coalition

Jenifer Ngo Waldrop

Executive Director

Rare Disease Diversity Coalition Email Formats

Rare Disease Diversity Coalition uses 2 email formats. The most common is {first name}{last name} (e.g., johndoe@bwhi.org), used 66.7% of the time.

Format	Example	Percentage
{first name}{last name}	johndoe@bwhi.org	66.7%
{first initial}{last name}	jdoe@bwhi.org	33.3%

About Rare Disease Diversity Coalition

The Black Women’s Health Imperative (BWHI) launched the Rare Disease Diversity Coalition (RDDC) to address the extraordinary challenges faced by rare disease patients of color. Despite mortality rates for rare diseases being disproportionately higher for African Americans and Latinos, both groups are consistently underrepresented in clinical trials. The Coalition brings together rare disease experts, health and diversity advocates, and industry leaders to identify and advocate for evidence-based solutions to alleviate the burden of rare diseases on communities of color. It is estimated that approximately 30 million Americans have a rare disease. In spite of such an exorbitant number, it takes, on average, five years, including consultations with over seven clinicians, to reach an accurate diagnosis. Furthermore, in the event that potentially life-altering treatment is decided upon, only 10% of rare diseases have a treatment approved by the Food and Drug Administration (FDA). For minorities with a rare disease, these challenges are, in many ways, compounded. Minority participants are virtually undetectable in genome-wide association studies and clinical research trials, which largely contributes to a lack of understanding about effective treatments. In addition to this, broader racial discrepancies in access to affordable care, along with social determinants of health create significant added barriers. To transform these existing systems, the RDDC is focused on reducing racial disparities in the rare disease community. Led by the BWHI and a leadership steering committee, the Coalition comprises of advocacy, community, and industry leaders. Their shared goals promote: ● Reducing racial disparities in the rare disease community ● Identifying and advocating for evidence-based solutions to alleviate the disproportionate burden of rare diseases on communities of color ● Helping to achieve greater equality within the rare disease community

Rare Disease Diversity Coalition revenue & valuation

Annual revenue	$598,885
Revenue per employee	$86,000
Estimated valuation?This valuation is estimated based on industry average for the Non-profit Organizations industry and current estimated revenues	$2,000,000
Total funding	No funding

Employees by Management Level

Total employees: 1-10

Seniority

Employees

Manager

Director

Employees by Department

Rare Disease Diversity Coalition has 2 employees across 1 departments.

Departments

Number of employees

Funding Data

Rare Disease Diversity Coalition has never raised funding before.

Frequently asked questions

Rare Disease Diversity Coalition is located in US.

You can reach Rare Disease Diversity Coalition at +18888348451.

Rare Disease Diversity Coalition has approximately 1-10 employees. The company continues to grow its workforce to support its business operations and expansion.

Key Contact at Rare Disease Diversity Coalition

Jenifer Ngo Waldrop

Executive Director

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