52:16

How YOU Can Help: Patient-Driven Research in Rare Cancers (Webinar)

01:06

Attend the 2024 NORD Breakthrough Summit - October 20-22, Washington, DC

02:20

Highlights from the 2024 Living Rare, Living Stronger NORD Patient and Family Forum

05:57

Natural History Studies for Drug Development Explained

02:30

Drug Repurposing - Rare Disease Drug Development Series Preview

01:03

Navigating Expanded Access - Rare Disease Drug Development Series Preview

00:33

Gina Glass, Executive Director of Dreamsickle Kids, on Reauthorizing the Rare Pediatric PRV Program

03:09

Dr. Annette Bakker, CEO of Children's Tumor Foundation, Explains the Importance of Pediatric PRVs

04:41

Dr. Leslie Gordon, Progeria Research Foundation, on Rare Pediatric Disease Priority Review Vouchers

40:48

Why Saving the Rare Pediatric Disease Priority Review Voucher Program Matters (Webinar)

08:05

¿Por qué debería hacerme pruebas genéticas incluso si tengo un diagnóstico?

05:49

Why should I get genetic testing if I already have a diagnosis?

07:54

Pruebas genéticas para enfermedades poco comunes y no diagnosticadas - NORD

06:14

Peter L. Saltonstall Tribute - 2024 NORD Rare Impact Awards

02:20

Highlights from the 2024 NORD Rare Impact Awards

43:51

Rare Breakthroughs in Research and Care - 2024 NORD Living Rare Forum

36:50

Finding Purpose Despite the Pain - 2024 NORD Living Rare Forum

47:58

The Benefits and Limitations of Genetic Testing - 2024 NORD Living Rare Forum

47:03

Sexual and Reproductive Health Issues in Rare Disease - 2024 NORD Living Rare Forum

43:42

Newborn Screening in America - 2024 NORD Living Rare Forum

48:21

Overcoming Insurance Barriers with Rare Disease - 2024 NORD Living Rare Forum

34:49

Health Equity for the Whole Rare Disease Community - 2024 NORD Living Rare Forum

20:10

Miles Levin Keynote and Film Screening - 2024 NORD Living Rare Forum

01:03:49

National Volunteer Month Webinar

05:40

Genetic Testing for Rare and Undiagnosed Disorders

01:04:29

Rare Disease Day Rare Teen Parents Webinar

01:05

Francis Collins Teaser Trailer

01:25

Preview of FARA Interview

20:06

05 Overcoming Ableism While Parenting

25:14

08 A Mother's Story: How My Son's Life Inspired Me to Make a Difference

40:41

04 Transitioning from Childhood to Adulthood with Rare Disease

01:57:28

The 2022 Rare Impact Awards

25:48

01 From Bitter to Better: My Invisible Rare Disease

46:16

07 Rare Breakthroughs: Hope Now And On The Horizon

51:57

06 Rare Disease Onset and Diagnosis in Adulthood

44:37

03 Beyond Coping: Resiliency While Rare

43:51

02 Building and Quarterbacking Your Care Team

49:06

Rare Breakthroughs: Hope Now and on the Horizon

15:31

Closing Keynote: Dented, Not Broken

41:30

Beyond the Disability or Diagnosis: Rare Disease in Adulthood

43:12

Debunking the Myths of Palliative Care

41:41

Rare in the Family: Family Planning and Decision-making

47:54

Living with Uncertainty

49:06

Rare Breakthroughs: Hope Now and on the Horizon

09:18

General Session Introduction

17:10

Opening Keynote: Resilient and Rare

39:56

How to Participate in Rare Disease Research

04:36

2023 NORD Breakthrough Summit: "I Am Enough" by Casey McPherson

01:50

Rare Disease Drug Development Education Series Trailer

01:12:26

Involucrar a las comunidades latinas de enfermedades raras

01:11:00

Engaging Latino Rare Disease Communities: Lessons from NORD’s Latinos and Rare Program

02:23:33

NORD Rare Impact Awards | 2023

01:59

Abbey Meyers Accepts Lifetime Achievement Award

38:03

NORD & CMS Webinar: Rare Diseases and the Inflation Reduction Act

57:50

Drug Development for Rare Diseases: A Community Conversation

01:57:28

The 2022 Rare Impact Awards

50:39

All A-Board: How to Identify and Recruit Board Members for Your Rare Nonprofit

51:26

Walk In Our Shoes: The Experience of Rare Disease Patients

01:12:43

Rare Disease Day 2022 | RAN New Jersey

01:11:19

Rare Disease Day 2022 | RAN Delaware