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August 30, 2022

TOPIC: Head of the Herd, Voices of Rare Cancer, Rare Cancer Coalition, Members, Research

Head of the Herd: Annie Achee, National Leiomyosarcoma Foundation (NLMSF)

Posted at August 8, 2022 08:29 am by Rohan Narayanan

Annie Achee is the President and Community Education/Research Liaison of the National Leiomyosarcoma Foundation (NLMSF). Leiomyosarcoma is a rare sarcoma (cancer) that originates in smooth tissue (including fat, muscle, nerves, tendons, and blood and lymph vessels) and can occur anywhere in the body. For more information, see the NORD Rare Disease… Read More

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August 22, 2022

TOPIC: Members

2022 Living Rare Forum Q&A

Posted at August 8, 2022 08:31 am by Rohan Narayanan

On June 29, 2022, NORD hosted the Living Rare, Living Stronger Patient and Family Forum live in Cleveland, Ohio and simultaneously to the rare disease community virtually across the globe. During the engrossing sessions and inspiring stories, expert speakers were asked questions on key rare disease topics and resources. Due to such an engaged live audience, not all… Read More

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August 18, 2022

TOPIC: Press Releases, Members

NORD Breakthrough Summit 2022: Highly Anticipated Rare Disease Conference Announces Keynote Speakers, Session Topics

Posted at August 8, 2022 09:59 am by Rohan Narayanan

NORD’s annual rare disease conference on October 17 and 18 in Washington, DC will showcase two days of insightful speakers, discussions, and in-person connection

WASHINGTON, DC, August 18, 2022 – The NORD® Rare Diseases & Orphan Products Breakthrough Summit® – the most highly anticipated, global rare disease conference of the year, every year – will be hosted on October 17… Read More

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August 18, 2022

TOPIC: Members, Medical

Solidify Your Legacy for Make a Will Month

Posted at August 8, 2022 08:12 am by Rohan Narayanan
August is Make a Will Month

August is national “Make a Will Month,” a critical moment for planned giving and making a lasting impact.  

Every adult – regardless of age – should take the time to create a will to ensure that any final wishes they may have are executed in the way they desire. Creating a will this month can offer peace… Read More

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August 1, 2022

TOPIC: Members

NORD to Host Historic FDA Meeting on Galactosemia, in Partnership with the Galactosemia Foundation

Posted at August 8, 2022 08:00 am by Rohan Narayanan

A historic, virtual meeting of the galactosemia community, FDA, and drug development leaders will be hosted on Thursday, September 1st  

Galactosemia is a rare, hereditary disorder that affects the body’s ability to convert galactose to glucose. Galactosemia affects 1 in every 40,000 to 1 in 60,000 newborns around the world. The… Read More

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Alone we are rare. Together we are strong.®