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August 21, 2019

TOPIC: Advocacy, Featured News, Get Involved, Sticky Posts for Homepage

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 2019 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

May 20, 2019

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

Deborah Skolaski: 2019 Rare Impact Award Honoree

Posted at May 5, 2019 01:31 pm by Lisa Sencen

Houston native Deborah Skolaski is the loving grandmother of Cori, a seven year-old living with metachromatic leukodystrophy. MLD is a genetic disorder that affects the nerves, muscles and other organs, as well as behavior. Deborah felt helpless as she observed the struggles that her son, daughter-in-law and Cori were experiencing. However, she was determined to make a… Read More

May 20, 2019

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

Madison Shaw: 2019 Rare Impact Award Honoree

Posted at May 5, 2019 01:25 pm by Lisa Sencen

Living through a lengthy diagnostic odyssey is unfortunately very common for rare disease patients. Madison “Maddie” Shaw’s journey to diagnosis took place over an intense and frustrating two and a half years when she was 12 and included acute infections, multiple hospitalizations and almost two dozen befuddled doctors. Despite extensive medical attention, it took Maddie’s mom noticing… Read More