Who are Genetic Counselors and how do they help your family?
Learn why knowing your family history can help keep you healthy, and the importance of newborn screening/genetic testing, and how a Genetic Counselor can help you and your family. Go to Global Genes website and access additional educational information (including a video with real patients and healthcare providers) as well as submit a Patient Services inquiry form to get specific answers to your questions.
About The Coalition
Black Women’s Health Imperative launched the Rare Disease Diversity Coalition to address the extraordinary challenges faced by rare disease patients of color. 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 disproportionate burden of rare diseases on communities of color.
An estimated 30 million Americans have a rare disease. By some approximations, it can take an average of five years and consultations with over seven clinicians to reach an accurate diagnosis for a rare disease. Additionally, only 10% of rare diseases have a treatment approved by the Food and Drug Administration.
For minorities with a rare disease, these challenges are compounded. Minorities are underrepresented in genome-wide association studies and clinical research trials, leading to a lack of understanding about effective treatments. Additionally, broader racial disparities in access to affordable care and social determinants of health create significant added barriers.
The Rare Disease Diversity Coalition is focused on reducing racial disparities in the rare disease community. The Coalition’s work is led by BWHI and a leadership steering committee comprised of advocacy, community, and industry leaders with the following goals:
● Reduce racial disparities in the rare disease community
● Identify and advocate for evidence-based solutions to alleviate the disproportionate burden of rare diseases on communities of color
● Help achieve greater equality within the rare disease community
What is Genetic Testing and why is it important?
What is Genetic Testing and why is it important? Our genes contain instructions for our bodies to work properly. Genetic Testing is a type of medical test that looks at our genes to find changes that may cause certain rare conditions. Genetic Testing may: Help you identify the cause of a rare condition. Help your doctor to better treat or manage the condition. Help check for certain conditions that run in your family and treat them early, even if you are healthy right now. Allow you to inform other family members of their chances of passing on the genetic condition. Help with family planning so you know the chances of passing on the genetic condition to your children.
Genetic Testing
Rare condition
Genetic condition
Rare Disease Diversity Coalition
San Diego California Town & Country Hotel, 500 Hotel Cir N 92108
For 35 years, Black Women’s Health Imperative (BWHI) has been the only national organization dedicated solely to improving the health and wellness of Black women and girls physically, emotionally, and financially. BWHI advances and promotes Black women’s health through three focus areas: Wellness Programs; Policy and Advocacy; and Research Translation. Read Our Mission: Here.
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