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COVID-19 Resource Center

The health and safety of those with rare diseases and their caregivers are always our top priorities at the National Organization for Rare Disorders® (NORD). We stand in solidarity with the rare community and would like to extend support for those impacted by COVID-19, directly and indirectly. By sharing resources on how to be prepared and seek proper care under these unusual circumstances, we hope to educate and empower the community during this unprecedented time.

NORD COVID-19 Resources

On-Demand Videos

NORD & FDA Listening Session: COVID19 Impact on Rare Disease Communities

NORD and FDA co-hosted a virtual "listening session," during which the rare disease community had the opportunity to share their experience living with a rare disease in the pandemic, and submit questions in advance directly to FDA staff about clinical trials, drug shortages, and PPE access.

NORD & FDA COVID19 Listening Session (Slide Deck)
NORD & FDA COVID19 Listening Session (Audio Transcript)

NORD Asks A Rare Disease Expert: COVID-19

In this series, NORD interviews rare disease experts across the country and asks them timely questions about COVID-19. More videos in this series will be released on the NORD Facebook page.

On-Demand Webinars

A Rare Response: Addressing the COVID-19 Pandemic

Access useful information on maintaining your physical and mental health during the pandemic. The webinar can now be viewed via archived version

Building a Village: How to Re-Engage Your Board Members, Leaders and Volunteers

Far too often, executive directors feel alone, like it's all up to them, and wish their board members and volunteers would be more engaged and invigorated. Never has this been more true than during the crises of 2020. In this keynote, Joan Garry, a champion for nonprofit leaders will look at how you can (and must) build a strong army of engaged stakeholders in order to survive--and thrive--on "the other side." Joan will talk through practical steps you can take right now in order to build a village of ambassadors and lead with intention.

Called to Action: NORD’s Response to COVID-19

View this recorded webinar to learn about how people with rare diseases are being affected by the pandemic and for a quick update on NORD initiatives and resources related to this public health crisis.

COVID-19 – Continuing the Conversation

FDA and CDC leaders discuss the COVID-19 pandemic and vaccines

COVID-19 Vaccines Update: FDA and CDC Leaders Address the Rare Disease Community

The National Organization for Rare Disorders (NORD), along with The ALS Association, Cystic Fibrosis Foundation and Muscular Dystrophy Association, is pleased to host this special webinar with leaders from the US Food and Drug Administration (FDA) and the Centers for Disease Control (CDC) to discuss the COVID-19 vaccines with the rare disease community. FDA recently granted Emergency Use Authorization (EUA) for the Pfizer and Moderna COVID-19 vaccines.

COVID-19: Current Status of Testing, Treatments and Vaccines

This webinar features Dr. Rishi Desai addressing the status of testing, the drugs under investigation as potential treatments and the outlook for a vaccine.

Crisis Communications: COVID-19 and the Future

Rare disease nonprofit organizations deliver an invaluable service to the community -- especially during the COVID-19 pandemic. Nonprofits nationwide are grappling with communicating hope while balancing the harsh reality of the pandemic's impact on their members' health, emotions, and finances. Join us on June 25, 2pm EST.

Fundraising in a Pandemic

Hear best practices and advice on fundraising in a pandemic. For access to slides and checklist resource, visit the COVID-19 Rapid Response Leadership Series page.

The Impact of the COVID-19 Pandemic on the Rare Disease Community

In this webinar, NORD and IQVIA will explore the impact the COVID-19 pandemic has had on patients and families, patient organizations, and companies engaged in orphan drug research. Hear from key opinion leaders on what the greatest challenges have been, how the community has responded, and what access to treatment and research may look like in a post-pandemic world.

Advocacy Opportunities and Tools

COVID-19 Policy Issues Contact Us Form

The NORD policy team wants to hear from you! Share the concerns are you hearing about that are impacting the rare disease community at large during the COVID-19 pandemic

Rare Action Network (RAN) COVID-19 Virtual Discussion Groups

All are invited to participate in state-based discussion groups to express concerns, ask questions, and hear updates from NORD's Policy team.

Share Your COVID-19 Telehealth Experience

The NORD policy team wants to hear from you! Share your experience with telehealth during the COVID-19 pandemic

Disease-Specific Resources for Patients

NORD Organizational Database

NORD’s Organizational Database was established to provide supportive information and resources for patients and families affected by rare diseases. If you know of an organization providing support for your rare disease, you can find their listing here, including a link to their homepage as well as contact information. Many of these organizations are frequently updating their webpages to provide COVID-19 education.

NORD Rare Disease Reports

The rare community uses NORD’s Rare Disease Database not only for the top-level, expert-reviewed information about specific rare diseases, but to connect to disease-specific organizations. We encourage patients to visit the Rare Disease report of their condition of interest, find the list of supporting organizations and browse their websites for disease-specific COVID-19 resources. Many of these organizations are frequently updating their webpages to provide COVID-19 education.

Informational Materials

NORD COVID-19 Community Survey Infographic

This inforgraphic presents impactful findings from NORD's COVID-19 Community Survey Report.

NORD COVID-19 Community Survey Report

NORD's COVID-19 Community Survey Report reveals the impact the pandemic is having on rare patients and families. The findings reflect a community directly affected and overwhelmingly concerned about the COVID-19 crisis.

Social Media, Misinformation and the COVID-19 Pandemic

Online misinformation is common, but during the COVID-19 pandemic it has become “viral.” It is important to check the source for any information you read online.

NORD COVID-19 Policy Statements

Resources for Nonprofits

Activating Your Medical Advisors for COVID19 Response

The NORD membership team has opened up their regular "members-only" webinar on April 16 to the public to help patient organizations learn how to provide coronavirus-related education to the patient and caregiver community in the form of statements from medical advisors and/or live, in-person informational events.

COVID-19 Rapid Response Leadership Series

The National Organization for Rare Disorders® (NORD) stands in solidarity with the rare disease community and extends support to individuals and nonprofit organizations impacted by COVID-19, directly and indirectly. As the nation’s largest independent patient advocacy organization for the rare disease community and through our work with nearly 700 leaders in our network of 315 rare nonprofits, we understand the unique, critical support these patient organizations provide for rare disease patients and caregivers.

Fundraising: Building your Case with Foundations and Industry

Now even more than ever, it is critical to build a strong case when aiming to fundraise with foundation and industry. For this members-only webinar, we brought expert speakers to discuss guidelines for relationship building and engaging industry and foundations to secure funding for your programs and research. NORD hosts monthly webinars throughout the year, but during this coronavirus crisis, we are opening access to this and other webinars that offer resources for rare nonprofits to combat the impact of the coronavirus.

Rare Policy Response to COVID-19

In this time of crisis and uncertainty, NORD’s Policy Team has been working to pursue policies at the federal and state levels to address COVID-19 related concerns critical to the rare disease community.

Additional COVID-19 Resources

* Information and links here are not necessarily endorsed by NORD but are shared for your consideration.

PPE Resources

PPE Resources

Get vetted PPE at bulk pricing through NORD's partnership with Project N95.

Medical Coverage Information

COBRA coverage and the Marketplace

Information about transitioning from job based coverage to other forms of coverage (including Medicaid and COBRA)

COBRA coverage continuation Q&A

Information about transitioning from job based coverage to other forms of coverage (including Medicaid and COBRA)

Health coverage options if you are unemployed

Information about coverage options if your are unemployed

Information on special enrollment periods

Information about transitioning from job based coverage to other forms of coverage (including Medicaid and COBRA)

Losing job based coverage

Information about transitioning from job based coverage to other forms of coverage (including Medicaid and COBRA)

Medicaid and CHIP coverage

Information about transitioning from job based coverage to other forms of coverage (including Medicaid and COBRA)

Updated guidance on grace periods for binder and premium payments

Information on grace periods for binder and premium payments

Official Resources

CDC Coronavirus Page

Official resource from the CDC about coronavirus including how to protect yourself and what to do if you are sick

CMS COVID-19 Stakeholder Engagement Calls Archive

Centers for Medicaid & Medicaid Services hosts varied recurring stakeholder engagement sessions to share information related to the agency’s response to COVID-19. These are open to members of the healthcare community and are intended to provide updates, share best practices among peers, and offer attendees an opportunity to ask questions of CMS and other subject matter experts.

FDA Coronavirus Disease Resources for Patients

Official resource for questions about FDA-regulated medical products (drugs, biologics, devices) and COVID-19

mRNA Vaccines for COVID-19

With the recent authorization of two mRNA vaccines for emergency use to fight COVID-19 and more vaccine candidates in development, we can build protection against the virus in our communities if enough people are vaccinated.

NIH COVID-19 Social Media Resources

NIH presents Facebook and Twitter resources and downloadable assets to encourage people to practice social distancing and help spread accurate information on COVID-19.

Online courses from the World Health Organization

OpenWHO is WHO’s new interactive, web-based, knowledge-transfer platform offering online courses to improve the response to health emergencies.

Social Security Administration website

All Social Security offices are currently closed to the public nationwide due to COVID-19, but most services are available through the Social Security Administration website.

Talking with Children about Coronavirus Disease 2019

CDC has created guidance to help adults have conversations with children about COVID-19 and ways they can avoid getting and spreading the disease

Emergency Preparedness

Event Emergency Preparedness Guide

Charity Dynamics outlines steps an organization can take to ensure open and proactive communications around events

Mental Health Support

Center for Chronic Illness

Educational and emotional support for people with rare/chronic illnesses via web-based support groups

Happy – 24/7

Support and encouragement from peer support counseling (new users may try it for free)

Meditation techniques from

Free 10-day beginner's course on meditation

Mental Health And COVID-19 – Information And Resources

Dedicated to those living with mental illness and to promoting overall mental health

Strategies for Coping with Loneliness and Isolation During the Coronavirus Pandemic

This article describes different types of isolation, includes tips for managing each and features perspectives from members of the [email protected] community on how they are personally managing isolation and social distancing.

Talking with Children about Coronavirus Disease 2019

Tips for talking to children about coronavirus

On-Demand Videos

Adenovirus-Based Vaccine for COVID-19

Adenoviruses have been used in gene therapy and have also been researched for use in vaccines for decades. An adenovirus-based vaccine was authorized for emergency use to fight COVID-19 in the U.S., along with the two mRNA vaccines. The American Society for Gene and Cell Therapy produced a video about how the adenovirus-based vaccine works and answers many common questions.

COVID-19 (Coronavirus Disease 19)

Osmosis, a NORD partner, presents a comprehensive video explaining COVID-19 facts

mRNA Vaccines for COVID-19

The use of messenger RNA (mRNA) in medical interventions has been researched for the last 20 years, including in vaccines hoping to fight diseases such as cancer, rabies, Ebola and the Zika virus. The American Society for Gene and Cell Therapy produced a video about mRNA vaccines in development for COVID-19. Lean more about how the vaccine works and find answers to many common questions below.

On-Demand Webinars

Coronavirus Preparedness for People with Chronic Diseases

The National Health Council, a NORD partner, hosted a webinar to address the concerns COVID-19 is causing globally. The speakers discussed the ways patient groups can assist their members and other constituents in reducing the impact of COVID-19, such as how patients with chronic diseases can avoid the illness, what to do if they feel sick and how patient groups can prepare to field inquiries from their members.

Understanding the Landscape of COVID-19 Vaccine and Treatment R&D

A one-hour webinar providing a high-level overview of the most promising scientific approaches underway to create vaccines, treat COVID-19 symptoms, cure serious cases, and prevent infection.

Online Events

Come hang out with The Mighty

Join The Mighty for a series of social events, including writing workshops, fun events for kids, interactive Facebook Lives, and more.

Social Distancing Struggles?

Our Odyssey hosts online meet ups for young adults living with rare and/or chronic conditions during this time of increased isolation

Resources for Nonprofits

COVID-19: Resources for Nonprofit Leaders

Resources on leadership, human resources, board governance and more from Nielson Training & Consulting, LLC

Crash Course in Remote Management PDF

Resources shared by the Chan Zuckerberg Initiative

Engaging Your Board and Leaders in Response to Crisis

Resources shared by the Chan Zuckerberg Initiative

Financial Strategies during COVID-19

Resources shared by the Chan Zuckerberg Initiative

How Nonprofits and Board Members Can Respond to COVID-19

Advice for nonprofits from BoardSource who are struggling with how to help their communities while also trying to survive themselves.

Microsoft COVID-19 Resource Guide for Nonprofits

Microsoft has several services, technology solutions, and trainings (many free or discounted) to help nonprofits ensure mission continuity during this challenging time.

Nonprofits and Coronavirus

The National Council of Nonprofits is a trusted resource and proven advocate for America’s charitable nonprofits

What Nonprofit Board Members Should Be Doing Right Now to Address the COVID-19 Situation

Information on board leadership in partnership with and in support of the CEO during the COVID-19 crisis

Stress Relief

12 Simple Ways to Teach Mindfulness to Kids

Mindfulness strategies for kids

Coronavirus: Mental Health Coping Strategies

Acknowledging, recognizing and acting on mental distress in these uncertain times

Meditation Apps for Kids

Mindfulness strategies and apps for kids

Mindful Parenting

Mindfulness strategies for parents

News from NORD

Martin’s Fight Against Waldenstrom Macroglobulnemia

Martin's story is about family and why and how we fight against rare cancer, and the sacrifices we make to keep the fight going

Read more >

NORD and Other Patient Advocacy Groups Issue Letter on Lack of Clear COVID-19 Vaccination Prioritization Guidance to the States for Rare Disease Patients

NORD urges the CDC to clarify their position and encourage states to allow patients with rare diseases that put them at risk of severe COVID-19 to receive the vaccine at an appropriate time.

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NORD and Partners Host FDA, CDC Leaders in Webinar Addressing Rare Disease Community on COVID-19 Vaccines

The program featured Dr. Stephen M. Hahn, former Commissioner of Food and Drugs, FDA; Dr. Peter Marks, Director, Center for Biologics Evaluation and Research, FDA; and Dr. Amanda Cohn, Chief Medical Officer, Office of Vaccine Policy, Preparedness and Global Health, Office of the Director, NCIRD, CDC.

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NORD Issues Report on Ensuring Access to Telehealth for Rare Diseases

88% of rare patients offered a telehealth appointment during COVID-19 accepted it, 92% of whom said it was a positive experience

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