RDDCTM Events

The latest RDDCTM events, webinars, and more.

RDDC Events

Upcoming Events

2024 RDDC Event Flyer
February 28, 2024

Rare Disease Day Award 2024 Reception

RDDC is looking forward to hosting our 2nd annual Rare Disease Day Reception on February 28th 2024 in Washington, DC. At the event RDDC will be presenting inaugural RISE awards to a handful of rare disease health equity champions who have been Resilient, Impassioned, Strong and Empowered towards the mission and vision of the RDDC. The reception will be held at LongView Gallery from 6pm to 8pm ET. Additional details to come in January.

Past Events

northsummit
November 2, 2023

North America Rare Disease Summit

North America Rare Disease Summit is a premier event for healthcare professionals, patient advocacy groups, and industry leaders to come together and discuss the latest developments of rare diseases. The summit will feature keynote speakers, panel discussions, and interactive sessions that will provide attendees valuable insights into the challenges and opportunities facing the rare disease community. Jenifer Waldrop, Executive Director of RDDC, will serve as a moderator for panelists Benjamin Forred of Sanford Health, N. Matthew Ellinwood of National MPS Society, Julia Jenkis of Everylife Foundation,  and Marc Yale of The International Alliance of Dermatology Patient Organizations (GlobalSkin) to engage in a discussion about “The patient’s voice as a driver of access and drug approvals.”
September 18, 2023-September 19, 2023

Global Genes/RDDC RARE Health Equity Forum 2023

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. 

May 23, 2023- May 24, 2023

Diverse Voices Unite for Equitable Clinical Trials

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:

  • Diversity in Clinical Trials: Definitions and The Why
  • Critical Barriers in Recruiting and Retention 
  • Action for Increasing Diversity 
  • Regulatory Updates 
rddcreception
February 27, 2023

2023 RDDC’s Rare Disease Reception

On February 27, 2023, the Rare Disease Diversity Coalition (RDDC) held its inaugural Rare Disease Day reception at Longview Gallery in our nation’s capital. The Washington, DC evening was cold and rainy, but that didn’t stop the rare disease community from stepping out and showing its support!
December 13, 2022

Effecting Change: Diversity & Cultural Competence in Research Webinar

This virtual conversation, “Effecting Change: Diversity & Cultural Competence in Research”, featured a discussion among diverse subject matter experts and professionals about the importance of having diverse and culturally competent professionals to improve diversity in research.
Jul 28, 2022

Rare Insight: Understanding gMG and the Barriers of Diagnosis Through a Lived Experienc

This virtual conversation featured a discussion among diverse subject matter experts and professionals about the importance of a shared identity among patients and providers to improve diversity in research and clinical trials.
February 28, 2022

RDDCTM Celebrates Rare Disease Day

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”

February 25, 2022

Rare Insight: Understanding gMG and the Barriers of Diagnosis Through a Lived Experience

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.

December 8, 2021

Black & Rare: Understanding APOL1

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.

Nov 15, 2021

Black & Rare: Thyroid Eye Disease

"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.

Nov 4, 2021

Black & Rare: Sarcoidosis in Black Women

"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.

June 29, 2021

Black and Rare: Scleroderma in the African-American Community

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.

Feb 23, 2021

Rare Disease Diversity CoalitionTM February Meeting

Watch a livestream of the inaugural meeting of the Rare Disease Diversity CoalitionTM.