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July 31, 2020

TOPIC: Featured News, Patients & Members, Head of the Herd

Head of the Herd: Seth Rotberg, Co-founder, Our Odyssey

Posted at July 7, 2020 12:15 pm by Laura Mullen

At the head of the herd is… Seth Rotberg, Co-Founder, Our Odyssey

Seth most frequently checks his… Twitter or Instagram accounts

Seth advocates for… Young adults between the ages of 18 – 35 living with a rare disease or chronic condition

Seth is located in… Boston, Massachusetts

How Seth got here… When I was 15 my mom was officially diagnosed with Huntington’s disease,… Read More

July 23, 2020

TOPIC: Press Releases, Featured News, COVID-19

NORD Awards COVID-19 Rapid Response Seed Grants to Rare Disease Patient Organizations Impacted by the Pandemic

Posted at July 7, 2020 10:02 am by Laura Mullen

Washington, DC, July 23, 2020—In response to the unprecedented challenges rare disease nonprofit organizations are currently facing, the National Organization for Rare Disorders (NORD®) today announced nineteen seed grant recipients of its COVID-19 Rapid Response Leadership Series program. The awards will assist patient advocacy groups to access capacity-buildingRead More

July 17, 2020

TOPIC: Featured News, Patients & Members, Head of the Herd

Head of the Herd: Taylor Kane, Founder and President, Remember the Girls

Posted at July 7, 2020 08:01 am by Laura Mullen

At the head of the herd is… Taylor Kane, Founder and President, Remember the Girls

Taylor advocates for those living as… Carriers of all X-linked diseases

Taylor is located in… Mount Laurel, New Jersey

Taylor most frequently checks her… Twitter page

How Taylor got here…  In 2001, when I was three-years-old, my dad was diagnosed with a rare X-linked disease called adrenoleukodystrophy… Read More

July 16, 2020

TOPIC: Press Releases, Featured News, Patients & Members, RareLaunch

CZI Grants to NORD and EURORDIS Support Organizational Capacity Building and Rare Disease Day Campaigns

Posted at July 7, 2020 12:30 pm by Laura Mullen

Today, the Chan Zuckerberg Initiative (CZI) announced $1.3 million in funding to support the global rare disease community through two distinct grants to NORD and EURORDIS-Rare Diseases Europe. These grants will support organizational capacity building programs and awareness campaigns for Rare Disease Day, respectively, and are part of CZI’s Rare As One Project, aimed at supporting the… Read More

July 6, 2020

TOPIC: Featured News, Patients & Members, COVID-19

The NORD Policy Team Wants to Hear About Your COVID-19 Telehealth Experience

Posted at July 7, 2020 04:42 pm by Laura Mullen

During the pandemic, many rare disease patients have been diligent about staying home as social distancing continues to be critical to minimize the spread of the coronavirus; as a result, many patients have switched to receiving ongoing care through telehealth. Telehealth is generally described as a virtual communication used to deliver care outside of a typical or traditional health… Read More