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 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)
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.
Access useful information on maintaining your physical and mental health during the pandemic. The webinar can now be viewed via archived version
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.
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.
FDA and CDC leaders discuss the COVID-19 pandemic and vaccines
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.
This webinar features Dr. Rishi Desai addressing the status of testing, the drugs under investigation as potential treatments and the outlook for a vaccine.
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.
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.
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.
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
All are invited to participate in state-based discussion groups to express concerns, ask questions, and hear updates from NORD's Policy team.
The NORD policy team wants to hear from you! Share your experience with telehealth during the COVID-19 pandemic
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.
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.
This inforgraphic presents impactful findings from NORD's 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.
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.
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.
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.
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.
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.
* Information and links here are not necessarily endorsed by NORD but are shared for your consideration.
Get vetted PPE at bulk pricing through NORD's partnership with Project N95.
Information about transitioning from job based coverage to other forms of coverage (including Medicaid and COBRA)
Information about transitioning from job based coverage to other forms of coverage (including Medicaid and COBRA)
Information about coverage options if your are unemployed
Information about transitioning from job based coverage to other forms of coverage (including Medicaid and COBRA)
Information about transitioning from job based coverage to other forms of coverage (including Medicaid and COBRA)
Information about transitioning from job based coverage to other forms of coverage (including Medicaid and COBRA)
Information on grace periods for binder and premium payments
Official resource from the CDC about coronavirus including how to protect yourself and what to do if you are sick
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.
Official resource for questions about FDA-regulated medical products (drugs, biologics, devices) and 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 presents Facebook and Twitter resources and downloadable assets to encourage people to practice social distancing and help spread accurate information on COVID-19.
OpenWHO is WHO’s new interactive, web-based, knowledge-transfer platform offering online courses to improve the response to health emergencies.
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.
CDC has created guidance to help adults have conversations with children about COVID-19 and ways they can avoid getting and spreading the disease
Charity Dynamics outlines steps an organization can take to ensure open and proactive communications around events
Educational and emotional support for people with rare/chronic illnesses via web-based support groups
Support and encouragement from peer support counseling (new users may try it for free)
Free 10-day beginner's course on meditation
Dedicated to those living with mental illness and to promoting overall mental health
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.
Tips for talking to children about coronavirus
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.
Osmosis, a NORD partner, presents a comprehensive video explaining COVID-19 facts
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.
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.
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.
Join The Mighty for a series of social events, including writing workshops, fun events for kids, interactive Facebook Lives, and more.
Our Odyssey hosts online meet ups for young adults living with rare and/or chronic conditions during this time of increased isolation
Resources on leadership, human resources, board governance and more from Nielson Training & Consulting, LLC
Resources shared by the Chan Zuckerberg Initiative
Resources shared by the Chan Zuckerberg Initiative
Resources shared by the Chan Zuckerberg Initiative
Advice for nonprofits from BoardSource who are struggling with how to help their communities while also trying to survive themselves.
Microsoft has several services, technology solutions, and trainings (many free or discounted) to help nonprofits ensure mission continuity during this challenging time.
The National Council of Nonprofits is a trusted resource and proven advocate for America’s charitable nonprofits
Information on board leadership in partnership with and in support of the CEO during the COVID-19 crisis
Mindfulness strategies for kids
Acknowledging, recognizing and acting on mental distress in these uncertain times
Mindfulness strategies and apps for kids
Mindfulness strategies for parents
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 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.
Read more >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.
Read more >88% of rare patients offered a telehealth appointment during COVID-19 accepted it, 92% of whom said it was a positive experience
Read more >
