Mar. 20, 2020
Posted by Valaree DonFrancesco
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 know our members are working tirelessly to support their communities during this global crisis. Rare disease organizations have felt the impact of the coronavirus pandemic on all elements of our work including mission-critical programs, research, patient assistance, events, meetings and other activities.
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.
At NORD, we made the decision late last week to have our entire staff across our three offices in Connecticut, Massachusetts and Washington, DC–including our busy call center–work remotely for the foreseeable future. We feel strongly that social distancing is the right thing to do to help slow the spread of COVID-19. Even as we find ourselves working from home, know that we continue to be here for you.
In these uncertain times, remember: Alone we are rare. Together we are strong.
COVID-19 Resources for the Rare Community
Guidance from Peter Saltonstall, NORD President & CEO
As information on the coronavirus COVID-19, dominates the news, the NORD continues to monitor the situation with the rare community in mind. Read an update from NORD’s President and CEO, Peter L. Saltonstall, including guidance from the Centers for Disease Control.
Fundraise with foundations and industry webinar
Non-profit organizations are managing this crisis by working round-the-clock to maintain continuity of vital patient services, but many are also losing money due to canceled fundraisers and events. Funding your mission is critical now more than ever, and it is crucial to build a strong case when aiming to fundraise with foundations and industry. You can access the webinar recording here.
Coronavirus preparedness for people with chronic diseases webinar
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. Access the webinar recording.
Social distancing struggles?
Our Odyssey is hosting online meet ups to help with social and emotional support for young adults living with rare and/or chronic conditions during this time of increased isolation. This organization is a new NORD Gold Member and was founded by young adults living with rare and chronic conditions. Details are below; please share with your community:
Mental health support
We understand the importance of treating mental health in addition to physical health, as many patients are now isolated and concerned about what’s to come. Here are some resources you can share with your community when they need additional support:
- Mental Health America: dedicated to those living with mental illness and to promoting overall mental health
- Center for Chronic Illness: provides educational and emotional support for people with rare/chronic illnesses via web-based support groups
- Happy- 24/7: offers support and encouragement from peer support counseling (new users can try it free of charge) COVID-19
Resources for NORD Members
Your BoardSource membership
Non-profit executives are discussing the impact of the coronavirus and sharing operational and programmatic strategies on the BoardSource Exchange, an online forum of conversation among non-profit professionals and executives. Check out this conversation specifically about COVID-19 resources for non-profit leaders.
Tell us how we can better support you
Please let us know if you have suggestions for resources (e.g. fact sheets, webinars, etc.) that are useful to your organization that we may potentially share with our members. We are here to help and support you, especially in this time of need. You can contact us anytime at [email protected].
COVID-19 Medical Resources
Child neurology guidance during COVID-19 pandemic
For the child neurology community, where children and families may need to spend time in clinics and hospitals or may experience lowered immunity, we are sharing additional guidance for how to proceed during this time when COVID-19 has reached pandemic status. The Child Neurology Foundation (CNF) has worked in collaboration with the Child Neurology Society to release a joint statement on where to find the most up-to-date information, as well as some data on the effects of COVID-19 in the child neurology community and tips for staying safe. Read more here.
Cancer clinical resources from ASCO
Is there definitive data showing cancer patients are at increased risk of complications from COVID-19? Do we have data from Italy or China about the risk of COVID-19 infection in temporarily neutropenic patients? The American Society of Clinical Oncology (ASCO) has developed resources for clinicians that may be helpful for anyone affected by cancer to read.
Currently, limited clinical cancer-specific data is available and information is evolving. This document answers questions ASCO has received based on evidence gathered through a PubMed search of the medical literature, a search of relevant websites with information on infectious diseases (CDC, WHO, IDSA, etc.), and input provided by clinical oncologists and infectious disease experts. ASCO will update this information as new questions emerge and evidence develops. Share this FAQ with medical professionals managing rare cancer patient care.
Pulmonary resources for clinicians and patients
The American Thoracic Society – a professional network of 18,000 pulmonary, critical care, and rheumatology clinicians and researchers – just released two facts sheets on COVID-19:
- Coronavirus – Public Health Resource for Clinicians
- Coronavirus – Patient Information Resource for General Public
COVID-19 Articles and News to Use
Families First Coronavirus Response Act
NORD joined other patient organizations this week in calling on the Senate to quickly pass the Families First Coronavirus Response Act, H.R. 6201. A letter was sent to the Senate and a statement was released earlier this week. Thankfully, the Senate listened and passed the bill Wednesday afternoon! This bill will take some crucial first steps to help individuals to access needing testing and practice social distancing.
NORD participated in a virtual advocacy day this week asking for increased funding for the Food and Drug Administration (FDA). It is critical that FDA can continue its important work, particularly in these trying times.
Chronicle of Philanthropy review impact of coronavirus on non-profits
The Chronicle of Philanthropy reviews how non-profits are being impacted by the coronavirus: Coronavirus Is Hard on Nonprofits That Rely on Events
Working from home? Tips on virtual meeting and more
The NORD Membership Team found this list of resources beneficial to non-profit leaders including topics such as setting up a work-from-home program and running effective virtual meetings. Source: Nieldson Training and Consulting, LLC