Rare Bootcamp: Empowering Rare Disease Warriors for the Battle

preview_player
Показать описание
People with #RareDiseases and their families are warriors – warriors who must overcome obstacles every day. And many are searching for new treatments.

For this reason, Ultragenyx and other sponsors invite members of the #RareDisease community to attend the Rare Bootcamp to prepare them for the battle ahead.

#RareStories
  1. Ultragenyx
Рекомендации по теме
Rare Bootcamp: Empowering 0:01:55

Rare Bootcamp: Empowering Rare Disease Warriors for the Battle

Rare Disease Day 2:45:32

Rare Disease Day 2023 - Accelerating Rare Disease Research: Patients as Partners

Once Upon A 0:04:33

Once Upon A Gene - Effisode - RARE Entrepreneur Bootcamp Warriors

The EveryLife Foundation 0:04:51

The EveryLife Foundation

Day 1: Landscape 0:51:04

Day 1: Landscape of NBS in the US | LDNBS Bootcamp

Access to Health 0:26:52

Access to Health Care: The North Carolina Newborn Screening Story

The importance of 0:01:00

The importance of taking a holistic approach to newborn screening advocacy

Day 2: Newborn 0:48:28

Day 2: Newborn Screening Advocacy | LDNBS Bootcamp

Reforming of the 0:00:39

Reforming of the ACHDNC

Ultragenyx Pharmaceutical Inc.: 0:23:47

Ultragenyx Pharmaceutical Inc.: Overcoming Challenges

Newborn screening is 0:00:15

Newborn screening is equitable, but we can improve

RNA treatments targeting 0:04:48

RNA treatments targeting rare diseases

Newborn Screening Bootcamp 1:19:44

Newborn Screening Bootcamp 2021 Day 1 (September 15)

Speeding up the 0:00:53

Speeding up the process

Newborn Screening Bootcamp 1:17:20

Newborn Screening Bootcamp 2021 Day 3 (September 30th)

Track 2 - 1:01:18

Track 2 - Developing Partnerships Among Rare Communities and Individuals

AIH Boot Camp: 0:46:44

AIH Boot Camp: A workshop for newly diagnosed patients

What state labs 0:00:58

What state labs want to know when adding a condition

Earlier is Better 0:00:18

Earlier is Better

Why PKU advocates 0:00:58

Why PKU advocates remain active in newborn screening

The importance of 0:01:13

The importance of data

What happens after 0:01:29

What happens after newborn screening?

MPN Hero Andrew 0:02:54

MPN Hero Andrew Schorr: Empowering MPN Patients Worldwide with Knowledge, Confidence, and Hope

The critical role 0:00:30

The critical role of newborn screening in research