The National Organization for Rare Disorders (NORD) held a webinar titled, “Diversity, Equity and Inclusion in Action: Case Studies from NORD’s Rare Cancer Coalition,” on February 19th, 2021 for NORD member organizations as well as other leaders and staff of non-profit organizations involved in rare diseases including pharma, patients, caregivers, and advocates. Guest speakers from NORD’s Rare Cancer Coalition shared their organizations’ efforts to address diversity, equity and inclusion (DEI) in their programming and outreach. The speakers offered insights in addressing crucial questions, such as:

  • What are key ways to make your website and events more accessible for those with disabilities?
  • How can you reach and engage with patient groups who have been disconnected from advocacy and resources?
  • How can you better understand diversity issues in rare disease research?

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Carolyn Tordella, Assistant Director of Communications for the LRG, presented a case study on the work the LRG did with the Women in Sarcoma Program in 2020. Other panelists included: Chandra Clark, Executive Director of the VHL Alliance; Danielle Leach, Chief of Community and Government Relations for the National Brain Tumor Society, and Susan Thornton, CEO of the Cutaneous Lymphoma Foundation.

This webinar was a great way to see how diversity issues affect hiring practices, access to treatments and medications, as well as access to diverse medical data for research purposes. Each organization offered a unique view of how they are affected by these issues and the steps they are taking to overcome these gaps. Also, it’s always good to see that no matter what our disease focus is, we struggle with a lot of the same issues and we (NORD members) can share ideas and support each other.  – Carolyn Tordella, Assist. Dir. of Communications for the Life Raft Group