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July 2, 2019

TOPIC: Events, Get Involved, Featured News, Medical, Patients & Members, Advocacy, Industry, Sticky Posts for Homepage

Registration Open for 2020 NORD Rare Summit

Posted at July 7, 2019 09:01 am by Lisa Sencen

The time is now

  • To address affordability for patients,
  • To drive progress with a unified voice,
  • To understand the role of advancing technology in rare disease, and
  • To register for the 2019 NORD Rare Summit!

In 2019, we believe The Time is Now to prioritize action in order to develop stronger resources, build better outcomes and find cures for the millions of Americans living with… Read More

July 1, 2019

TOPIC: Get Involved, Featured News

Help for rare disease patients impacted by Hurricane Dorian

Posted at July 7, 2019 11:37 am by Valaree DonFrancesco

NORD’s Hurricane Emergency Relief Fund provides limited financial assistance to those with a rare disease who are victims of natural disasters.

Emergency relief funds may be requested once per household/per lifetime for up to $500.

Expenses that may be covered under this award:

  • Unexpected utility costs, such as those caused by severe weather
  • Read More

June 27, 2019

TOPIC: Patients & Members, Events, Get Involved

NORD’s 2019 Living Rare, Living Stronger Weekend Highlights

Posted at June 6, 2019 09:32 am by Lisa Sencen

We would like to extend our sincerest thanks to all those who joined us during the Living Rare, Living Stronger NORD Patient & Family Forum, June 21-23 in Houston. Over 500 individuals came out for a weekend filled with learning, sharing, bonding and fun. Our hope is that this event provided the tools, information and… Read More

June 17, 2019

TOPIC: Get Involved, Featured News, Patients & Members, Events

Catch Living Rare Forum Plenaries and The Rare Impact Awards on Facebook Live!

Posted at June 6, 2019 09:21 am by Lisa Sencen

NORD’s Living Rare, Living Stronger Patient & Family Forum is coming us this weekend on June 21-23 in Houston, TX. For those not joining us in-person, please join us online! You can catch select content on Facebook Live – including the Rare Impact Awards, Saturday, June 22, 7:30p.m. CST!

Tune in for… Read More

May 21, 2019

TOPIC: Featured News, Patients & Members, Patient Stories, Get Involved

Exciting Rare Impact Awards Announcements

Posted at May 5, 2019 10:34 am by Lisa Sencen

This year’s Rare Impact Awards are going to be spectacular! From star power to the heroes of the rare disease community, it is going to be a night to remember. Every registration to the Living Rare, Living Stronger NORD Patient and Family Forum, June 21-23 in Houston, TX, comes with a complimentary ticket to this terrific event. Read More