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February 28, 2022

TOPIC: Rare Disease Day, Press Releases

The Most Important Holiday Most Don’t Know: Celebrating Rare Disease Day

Posted at February 2, 2022 08:27 am by Rohan Narayanan

NORD, the official US sponsor of Rare Disease Day, is a leading voice raising awareness among the public and decision-makers about the challenges faced by the rare disease community

February 28, 2022, Washington, DC – Today is Rare Disease Day, a global celebration to raise awareness among the public and decision-makers about the challenges faced by the over 25 million… Read More

February 22, 2022

TOPIC: Patient Stories, Rare Disease Day, Members

Community, Action and Being Grateful: Rowan’s Rare Disease Journey

Posted at February 2, 2022 08:05 am by Rohan Narayanan

Our journey to the rare disease community was somewhat lengthy, as it is for many families. The day my son Rowan was born we knew something was wrong, but it took 21 extremely long months of back-to-back testing to simply give that “thing” a name. Merely to define his symptoms… Read More

February 18, 2022

TOPIC: Rare Disease Day, Industry

Rare Disease Day 2022: Advancing the Conversation Around Health Equity

Posted at February 2, 2022 07:46 am by Rohan Narayanan

The following is a guest post from Tamar Thompson, Head of Corporate Affairs, Alexion.

Each year, on the last day of February, Alexion joins together with all those in the rare disease community to recognize Rare Disease Day, a global event led by EURORDIS that aims to raise awareness of rare diseases. This year, the theme for Rare Disease… Read More

February 17, 2022

TOPIC: Members, Patient Stories, Rare Disease Day

Rare Disease Day: Riaan’s Story

Posted at February 2, 2022 09:00 am by Maia Craig
A photo of Riaan and his mother

Leading up to #RareDiseaseDay on February 28, NORD is sharing stories from patients and caregivers impacted by rare disease. This week, we are sharing Riann’ s journey with Cockayne Syndrome and his family’s wishes for the rare disease community. If you want to share your rare story in honor of Rare Disease Day, visit NORD’s… Read More

February 17, 2022

TOPIC: Press Releases, Get Involved, Rare Disease Day

Rare Disease Advocates and Supporters Share the Importance of Raising Awareness Ahead of Rare Disease Day 2022

Posted at February 2, 2022 08:36 am by Rohan Narayanan

Organizations and individuals from across the country are partnering with NORD to help make a difference for rare disease patients and families on Rare Disease Day 2022

February 17, 2022, Washington, DC – Leading up to Rare Disease Day on Monday, February 28, the National Organization for Rare Disorders (NORD) is highlighting the partners and supporters of this incredible international… Read More