The latest RDDCTM events, webinars, and more.
Join us for the 3rd installment of Improving Health Equity Series: The Healthcare Professional's Responsibility for Health Equity! This FREE virtual event, hosted by the Bluff City Medical Society Foundation, will feature an incredible panel of experts tackling health disparities and promoting justice, equity, and inclusion in healthcare.
Date: November 2, 2024
Time: 11 AM CST | 12 PM EST
CME Credits Available: 1 AMA PRA Category 1 Credit(s)™
Panelists include:
Moderator: LaTonya Washington, MD, MBA
The RARE Health Equity Forum, hosted by Global Genes in partnership with the Rare Disease Diversity Coalition (RDDC) convened all stakeholders in the rare disease community to identify collaborative efforts to address inequities in the care of patients with rare diseases, specifically focusing on reducing disparities, discrimination, and biases felt by patient communities based on factors including socioeconomic status, ability, geographic location, religion, race, ethnicity, gender identity, and/or language. Through plenary sessions, networking, and interactive workshops, this event empowered attendees to advocate for more inclusion in the rare disease community and provided them with strategic insights and tools to support underserved and/or underrepresented patients. The event took place on September 18, 2023 – September 19, 2023, at Sheraton Harbor Island, 1380 Harbor Island Dr, San Diego, CA 92101.
Outsourcing In Clinical Trials East Coast will occur on May 23-24, 2023, in King of Prussia, PA. This two-day event features an array of case studies, panel discussions, and face-to-face networking opportunities around clinical operations, technology and innovation, and data management. It will provide opportunities to discover effective strategies for outsourcing clinical trial operations to ensure trials run smoothly and within budget. Black Women’s Health Imperative President, Linda Goler Blount, RDDC Executive Director, Jenifer Waldrop, Harsha K Rajasimha, Ph.D., Founder and Executive Chairman, Indo US Organization for Rare Diseases (IndoUSrare), Jen Horonjeff, CEO, Savvy Cooperative and Ram Raju, Senior Vice President and Community Health Investment Officer, Northwell Health will engage in a panel discussion about “Diversity & Inclusion in Clinical Trials”. This discussion focuses on:
Held on Rare Disease Day, this event was comprised of two panel discussions, where our expert speakers will tackle the most important issues facing rare disease patients of color today, including racial bias to clinical trials.
Panel #1 “Knowledge is Power: A Conversation with the Tate Brothers Around Rare Disease” Panel #2 “How to Advocate for your health as a BIPOC Patient”
This webinar was produced in collaboration with Alexion Pharmaceuticals. Our panel of healthcare experts and rare disease patients addressed important issues regarding generalized Myasthenia Gravis (gMG), including signs and symptoms, barriers that can delay diagnosis, how to manage gMG, and strategies that can be used to raise awareness among our stakeholders.
During this webinar, our expert panelists discussed the causes of APOL1 genetic variants and the medical outcomes that can arise from them. They will also discuss strategies to raise awareness and mobilize stakeholders so that African Americans, who are more likely to suffer APOL1-related kidney disease than other racial and ethnic groups, can receive more timely diagnoses and treatment.
"Black & Rare: Thyroid Eye Disease " is a webinar produced by the Rare Disease Diversity CoalitionTM (RDDCTM) in collaboration with Horizon Therapeutics. Our panel of clinical experts, organizers, and rare disease patients addressed important issues regarding Thyroid Eye Disease (TED) including: incidence rates in communities of color, the link between Graves' disease and TED, and strategies that can be used to raise awareness among our stakeholders.
"Black & Rare: Sarcoidosis in Black Women" is a webinar produced by the Rare Disease Diversity CoalitionTM (RDDCTM) in collaboration with the Foundation for Sarcoidosis Research. Our expert panelists discussed the clinical knowledge that has been gathered around sarcoidosis, its high incidence rates in African Americans communities(in particular among African American women), and strategies to raise awareness and mobilize stakeholders so that patients living with this rare disease receive more support.
Black and Rare: Scleroderma in the African-American Community is a webinar produced by the Black Women’s Health Imperative’s (BWHI) Rare Disease Diversity CoalitionTM (RDDCTM). The experts taking part in this event unpacked the clinical knowledge that has so far been gathered around scleroderma, how the disease affects the African-American community and ways to mobilize stakeholders to ensure that Black patients get the best treatments and care available. This virtual seminar will took place on World Scleroderma Day, Tuesday, June 29, 2021, from 1:00 - 2:00 PM EST.
Watch a livestream of the inaugural meeting of the Rare Disease Diversity CoalitionTM.
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