{"id":59119,"date":"2020-03-20T13:32:58","date_gmt":"2020-03-20T17:32:58","guid":{"rendered":"https:\/\/rarediseases.org\/covid-19-resources-for-non-profit-leaders-and-the-community\/"},"modified":"2022-12-02T08:13:35","modified_gmt":"2022-12-02T13:13:35","slug":"covid-19-resources-for-non-profit-leaders-and-the-community","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/covid-19-resources-for-non-profit-leaders-and-the-community\/","title":{"rendered":"COVID-19 Resources for Non-profit Leaders and the Community"},"content":{"rendered":"

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.<\/p>\n

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.<\/p>\n

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.<\/p>\n

In these uncertain times, remember: Alone we are rare. Together we are strong.<\/strong><\/p>\n

COVID-19 Resources for the Rare Community<\/h3>\n

\"\"Guidance from Peter Saltonstall, NORD President & CEO<\/strong><\/p>\n

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<\/a> from NORD’s President and CEO, Peter L. Saltonstall, including guidance from the Centers for Disease Control.<\/p>\n

Fundraise with foundations and industry webinar<\/strong><\/p>\n

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<\/a>.<\/p>\n

\"\"Coronavirus preparedness for people with chronic diseases webinar<\/strong><\/p>\n

The National Health Council<\/a>, 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<\/a>.<\/p>\n

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\"\"Social distancing struggles?<\/strong><\/p>\n

Our Odyssey<\/a> 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:<\/p>\n

Take a look at upcoming virtual events<\/a><\/p>\n

Mental health support<\/strong><\/p>\n

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:<\/p>\n