30:29

Rare Across America 2024: Share Your Story with Policymakers Webinar

58:17

Accessible Creativity: Tools and Techniques for Rare Artists

58:10

Rare Across America 2024: General Training Webinar

58:50

June 27, 2024: RDLA Monthly Webinar

58:23

Pride in Rare Kickoff Webinar

17:19

Dominique Pichard

15:11

Adora Ndu

12:11

Christine Waggoner

08:27

Ethan Perlstein

12:35

Annie Kennedy

51:24

May 30, 2024: Monthly RDLA Webinar

05:29:38

EveryLife Foundation for Rare Diseases - Scientific Workshop 2024

23:23

Intro to Advocacy

01:02:32

Share Your Story: Digital Storytelling

01:13

Tyler Ordonez - Youth and Teen Advocacy Day

34:09

April 25th, 2024: Monthly RDLA Webinar

31:55

2024 #RAREis Scholarship: Application Overview

54:39

March 21st, 2024: Monthly RDLA Webinar

02:36

Rare Disease Week 2023

02:35

Rare Disease Week 2024

01:18:17

Legislative Conference 2024 - Opening Keynote Legislative Outlook

01:29:34

Legislative Conference 2024 - Deep Dive Policy Ask 1 and 2

48:04

Legislative Conference 2024 - Deep Dive 3

42:06

Legislative Conference 2024 - Deep Dive 4

48:56

Legislative Conference 2024 - Emerging Policy and Closing Remarks

43:01

Rare Disease Week 2024 - Documentary Screening

02:01

Sylvie Leyerle [Rare Artist 2023]

02:03

Seth Bailey [Rare Artist 2023]

01:44

Maya Rivera [Rare Artist 2023]

01:49

Madison Cooke [Rare Artist 2023]

01:58

Jessica Miles [Rare Artist 2023]

02:02

Grijs DeKruif [Rare Artist 2023]

02:03

Gisela Victoria [Rare Artist 2023]

02:32

Emma Shaberg [Rare Artist 2023]

02:15

Elizabeth Hoverman [Rare Artist 2023]

01:21

Alice Arkell [Rare Artist 2023]

29:39

Rare Disease Week 2024: Share Your Story with Policymakers Webinar

01:21:36

Rare Disease Week 2024: General Training Webinar

01:05

Abbey Hauser, Advocacy Chair, Rare Disease Week 2024

00:51

James Griffin - Advocacy Vice Chair, Rare Disease Week 2024

01:02:58

January 18th, 2024: Monthly RDLA Webinar

01:10:58

Newborn Screening Bootcamp Clip Session

01:11:26

The 12th Annual RareVoice Awards

10:10

Cynthia Bens

10:23

Nicholas Manetto

02:24

Lisa Carlton

06:07

Brett Kopelan

08:16

Jackie Weinrich

07:33

Kyle Underwood

10:21

Inflation Reduction Act

01:00:04

November 16, 2023: Monthly RDLA Webinar

05:55:29

Newborn Screening Bootcamp 2023

04:59

RareVoice Awards 2023 (Finalists Revealed) rarevoiceawards.org

01:04:11

October 19, 2023: Monthly RDLA Webinar

01:00:45

Share Your Story through Social Media Webinar: October 11, 2023

06:16

YARR Summer Series Presents Medical Nutrition

58:08

Congressional Caucus Briefing : September 14, 2023

01:09:33

September 27th, 2023: RDLA Monthly Webinar

04:10

YARR Summer Series Presents Medical NutritionDescription:

03:39

Senator Amy Klobuchar - Newbron Screening