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.
Join us on May 21, 2-2:30pm EDT for a free webinar with Captain Paras Patel, from the FDA Drug Shortage Staff, and Sheila Arquette, Executive Director of the National Association of Specialty Pharmacy, to discuss how the FDA is monitoring supply and working with industry to alleviate drug shortages during the COVID-19 pandemic, and what actions the pharmaceutical industry is taking to ensure that patients receive their medications without interruption. This webinar is perfect for patients, caregivers, advocates and the general public.
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.
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.
* Information and links here are not necessarily endorsed by NORD but are shared for your consideration.
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.
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.
Drawing on NORD’s expertise in capacity-building and nonprofit management during crises, the new program will support rare disease patient organizations through education, training and resources.Read more >
NORD’s COVID-19 Premium & Medical Relief Program assists eligible rare disease patients facing financial challenges with out of pocket costs of health insurance premiums and limited medical assistance.Read more >
The findings of the recently released NORD COVID-19 Community Survey Report reflect a community directly affected and overwhelmingly concerned about the COVID-19 crisis.Read more >
95% of respondents report being impacted to the detriment of their immediate and long-term health and well-being; 98% reported being gravely worried about COVID-19.Read more >