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Called to Action NORDs Response to COVID19 For more information - PowerPoint PPT Presentation

Aug 18, 2023 •147 likes •196 views

Called to Action NORDs Response to COVID19 For more information please visit the NORD COVID19 Resource Center on our website: www.rarediseases.org/COVID19 Issues & Concerns for U.S. Families Most Common Issues and Concerns

  1. Called to Action NORD’s Response to COVID‐19 For more information please visit the NORD COVID‐19 Resource Center on our website: www.rarediseases.org/COVID‐19

  2. Issues & Concerns for U.S. Families Most Common Issues and Concerns • Not being able to access PPE (masks & gloves) • Not able to access testing and risk of false negatives • Drug shortages • Access to medical services (home infusions, lab work, therapies) • Financial stability (paying for medications, mortgage/rent, utilities) • Equity of care for patients with chronic conditions in ERs • Returning to work if they or a family member are immunocompromised or at high‐risk. • Staying safe now and when this is “over”

  3. COVID‐19 Advocacy & Resources for Families Advocating on Behalf of the Rare Community • Access to medical treatment: Home infusion services, telemedicine, prescription refills • Discrimination in COVID triaging and emergency response protocols • Paid leave COVID‐19 Non‐Medical, Premium and Medical Relief Programs • Financial assistance for rare families in the U.S. impacted by COVID‐19 Webinars and On‐Demand Videos • NORD’s Ask a Rare Disease Expert About COVID‐19 Video Series • Maintaining Your Physical and Mental Health • Current Status of Testing, Treatments and Vaccines • Drug Supply in the Time of COVID‐19 • Telehealth and Rare Disease Treatment Webinars and Resources for Patient Organizations • How to Activate Your Medical Boards to Respond to COVID‐19 • Virtual Fundraisers: How to Raise Money During COVID‐19

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