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October 29, 2019

TOPIC: Advocacy, Events, Featured News

NORD’s Rare Action Network Mobilized for a Successful Hill Day

Posted at October 10, 2019 05:58 pm by Laura Mullen

On the heels of the 2019 Rare Diseases and Orphan Products Breakthrough Summit, NORD’s Rare Action Network (RAN) Volunteer State Ambassadors made their way to Capitol Hill on October 23, 2019, to tell their stories and show their stripes. Ambassadors from 20 states met with 30 congressional offices to talk about a… Read More

October 1, 2019

TOPIC: Advocacy, Events, Featured News, Patient Stories

Today is #RareCancerDay!

Posted at October 10, 2019 08:32 am by Laura Mullen

The big day is here – Rare Cancer Day! Launched by the National Organization for Rare DisordersⓇ (NORD) and the NORD Rare Cancer Coalition, the goal of #RareCancerDay is to raise critical awareness of rare cancers and the need for greater research funding and patient support.

“I’ve never heard of that!” is often the response people living with rare cancers hear… Read More

August 21, 2019

TOPIC: Advocacy, Featured News, Get Involved, Press Releases

Mark Your Calendars – October 1 is Rare Cancer Day!

Posted at August 8, 2019 09:19 am by Laura Mullen

Washington, DC, August 29, 2019–The National Organization for Rare DisordersⓇ (NORD) has announced a day devoted to raising awareness about rare cancers. Spearheaded by the NORD Rare Cancer Coalition, which is comprised of 24 rare cancer-specific Member Organizations, Rare Cancer Day will be observed on October 1 to highlight the challenges people living with rare cancers face… Read More

July 2, 2019

TOPIC: Advocacy, Events, Featured News, Get Involved, Industry, Medical, Patients & Members, 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

May 20, 2019

TOPIC: Advocacy, Featured News

The Honorable Sarah Davis: 2019 Rare Impact Award Honoree

Posted at May 5, 2019 03:28 pm by Lisa Sencen

Representative Sarah Davis is a dedicated champion of the rare disease community in her home state of Texas. She is currently serving her fifth term as the State Representative for Texas House District 134, located in Houston, Texas. In Representative Davis’ role as Chair of the Appropriations Subcommittee on Health and Human Services (Article II), she has… Read More