RARE Revolution Magazine
RARE Revolution Magazine
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RARE REV-inar episode 012- Part 1 - Inherited metabolic disorders (IMD's)
This is an excerpt from a longer webinar called “Shining a spotlight on neurological features of inherited metabolic disorders” which aired on 28th March 2024 . For the rest of the videos and the full webinar please visit www.rarerevolutionmagazine.com
Переглядів: 20

Відео

RARE REV-inar episode 012- Part 2 - Barriers to diagnosis of neurometabolic disorders30:18RARE REV-inar episode 012- Part 2 - Barriers to diagnosis of neurometabolic disorders
RARE REV-inar episode 012- Part 2 - Barriers to diagnosis of neurometabolic disorders
Переглядів 64 місяці тому
This is an excerpt from a longer webinar sponsored by Inizio Medical and Medistrava Medical called “Shining a spotlight on neurological features of inherited metabolic disorders” which aired on 28th March 2024 . For the rest of the videos and the full webinar please visit www.rarerevolutionmagazine.com
RARE REV-inar episode 012- Part 3 - Increasing awareness of neurometabolic disorders22:10RARE REV-inar episode 012- Part 3 - Increasing awareness of neurometabolic disorders
RARE REV-inar episode 012- Part 3 - Increasing awareness of neurometabolic disorders
Переглядів 94 місяці тому
This is an excerpt from a longer webinar sponsored by Inizio Medical and Medistrava Medical called “Shining a spotlight on neurological features of inherited metabolic disorders” which aired on 28th March 2024 . For the rest of the videos and the full webinar please visit www.rarerevolutionmagazine.com
RARE Rev-inar Episode 013 Rare Caregivers Report Part 1 The role of the caregiver17:29RARE Rev-inar Episode 013 Rare Caregivers Report Part 1 The role of the caregiver
RARE Rev-inar Episode 013 Rare Caregivers Report Part 1 The role of the caregiver
Переглядів 264 місяці тому
RARE Rev-inar Episode 013 Rare Caregivers Report Part 1 The role of the caregiver within the construct of a family or close personal relationship. This is an excerpt from a longer webinar sponsored by Rare Patient Voice called Rare Caregivers Report: Experiences supporting loved ones living with rare diseases. Featuring: Wes Michael, founder and president of Rare Patient Voice' and husband and ...
RARE Rev-inar Episode 013 Rare Caregivers Report Part 2: The impact on the caregiver.19:28RARE Rev-inar Episode 013 Rare Caregivers Report Part 2: The impact on the caregiver.
RARE Rev-inar Episode 013 Rare Caregivers Report Part 2: The impact on the caregiver.
Переглядів 234 місяці тому
RARE Rev-inar Episode 013 Rare Caregivers Report Part 2: The impact on the caregiver. This is an excerpt from a longer webinar sponsored by Rare Patient Voice called Rare Caregivers Report: Experiences supporting loved ones living with rare diseases. Featuring: Wes Michael, founder and president of Rare Patient Voice' and husband and wife team, Celia and James Chartres-Aris. Celia is an active ...
RARE Rev-inar Episode 013 Rare Caregivers Report Part 3: Support for the caregiver.28:10RARE Rev-inar Episode 013 Rare Caregivers Report Part 3: Support for the caregiver.
RARE Rev-inar Episode 013 Rare Caregivers Report Part 3: Support for the caregiver.
Переглядів 304 місяці тому
RARE Rev-inar Episode 013 Rare Caregivers Report Part 3: Support for the caregiver. This is an excerpt from a longer webinar sponsored by Rare Patient Voice called Rare Caregivers Report: Experiences supporting loved ones living with rare diseases. Featuring: Wes Michael, founder and president of Rare Patient Voice' and husband and wife team, Celia and James Chartres-Aris. Celia is an active ca...
RARE REV-inar episode 010 - Burned out and Breaking? Part 1 - What is burnout?23:19RARE REV-inar episode 010 - Burned out and Breaking? Part 1 - What is burnout?
RARE REV-inar episode 010 - Burned out and Breaking? Part 1 - What is burnout?
Переглядів 16 місяців тому
This is an excerpt from a longer webinar called “Burned out and Breaking? Are the increasing demands on RARE advocates hindering progress?” For the rest of the videos and the full webinar please visit www.rarerevolutionmagazine.com
RARE REV-inar episode 010 - Burned out and Breaking? Part 2: Charity leader burnout25:02RARE REV-inar episode 010 - Burned out and Breaking? Part 2: Charity leader burnout
RARE REV-inar episode 010 - Burned out and Breaking? Part 2: Charity leader burnout
6 місяців тому
This is an excerpt from a longer webinar called “Burned out and Breaking? Are the increasing demands on RARE advocates hindering progress?” For the rest of the videos and the full webinar please visit www.rarerevolutionmagazine.com
RARE REV-inar episode 010 - Burned out and Breaking? Part 3: Industry burnout22:45RARE REV-inar episode 010 - Burned out and Breaking? Part 3: Industry burnout
RARE REV-inar episode 010 - Burned out and Breaking? Part 3: Industry burnout
Переглядів 16 місяців тому
This is an excerpt from a longer webinar called “Burned out and Breaking? Are the increasing demands on RARE advocates hindering progress?” For the rest of the videos and the full webinar please visit www.rarerevolutionmagazine.com
RARE REV-inar episode 010 - Burned out and Breaking? Part 4: Solutions to burnout20:18RARE REV-inar episode 010 - Burned out and Breaking? Part 4: Solutions to burnout
RARE REV-inar episode 010 - Burned out and Breaking? Part 4: Solutions to burnout
6 місяців тому
This is an excerpt from a longer webinar called “Burned out and Breaking? Are the increasing demands on RARE advocates hindering progress?” For the rest of the videos and the full webinar please visit www.rarerevolutionmagazine.com
RARE REV-inar episode 011 - Women in RARE part 120:13RARE REV-inar episode 011 - Women in RARE part 1
RARE REV-inar episode 011 - Women in RARE part 1
Переглядів 359 місяців тому
Women in RARE A celebration of women in RARE science and research. Sponsored by Alexion AstraZeneca Rare Disease. Originally aired on International Women's Day, 8th March 2024 Part 1: Women in RARE
RARE REV-inar episode 011 - part 2 - Women in RARE: driving change together15:24RARE REV-inar episode 011 - part 2 - Women in RARE: driving change together
RARE REV-inar episode 011 - part 2 - Women in RARE: driving change together
Переглядів 149 місяців тому
Women in RARE A celebration of women in RARE science and research. Sponsored by Alexion AstraZeneca Rare Disease. Originally aired on International Women's Day, 8th March 2024 Part 2 - Women in RARE: driving change together
RARE REV-inar episode 011 - Part 3 - Women in RARE: interdependence in the RARE ecosystem28:20RARE REV-inar episode 011 - Part 3 - Women in RARE: interdependence in the RARE ecosystem
RARE REV-inar episode 011 - Part 3 - Women in RARE: interdependence in the RARE ecosystem
Переглядів 129 місяців тому
Women in RARE A celebration of women in RARE science and research. Sponsored by Alexion AstraZeneca Rare Disease. Originally aired on International Women's Day, 8th March 2024 Part 3 - Women in RARE: interdependence in the RARE ecosystem
RARE REV-inar Episode 005 Understanding aTTP Part 3 -Support networks for aTTP.24:48RARE REV-inar Episode 005 Understanding aTTP Part 3 -Support networks for aTTP.
RARE REV-inar Episode 005 Understanding aTTP Part 3 -Support networks for aTTP.
Переглядів 5Рік тому
RARE REV-inar Episode 005 Understanding aTTP Part 3 -Support networks for aTTP.
RARE REV-inar Episode 005 Understanding aTTP Part 2 - Living with aTTP.21:34RARE REV-inar Episode 005 Understanding aTTP Part 2 - Living with aTTP.
RARE REV-inar Episode 005 Understanding aTTP Part 2 - Living with aTTP.
Переглядів 13Рік тому
RARE REV-inar Episode 005 Understanding aTTP Part 2 - Living with aTTP.
RARE REV-inar Episode 005 Understanding aTTP Part 1. What is aTTP?14:55RARE REV-inar Episode 005 Understanding aTTP Part 1. What is aTTP?
RARE REV-inar Episode 005 Understanding aTTP Part 1. What is aTTP?
Переглядів 26Рік тому
RARE REV-inar Episode 005 Understanding aTTP Part 1. What is aTTP?
RARE REV-inar Episode 009 Understanding cold agglutinin disease (CAD) Part 3 - Support networks CAD27:43RARE REV-inar Episode 009 Understanding cold agglutinin disease (CAD) Part 3 - Support networks CAD
RARE REV-inar Episode 009 Understanding cold agglutinin disease (CAD) Part 3 - Support networks CAD
Переглядів 37Рік тому
RARE REV-inar Episode 009 Understanding cold agglutinin disease (CAD) Part 3 - Support networks CAD
RARE REV-inar Episode 009 Understanding cold agglutinin disease (cad) Part 2 - Living with CAD.21:07RARE REV-inar Episode 009 Understanding cold agglutinin disease (cad) Part 2 - Living with CAD.
RARE REV-inar Episode 009 Understanding cold agglutinin disease (cad) Part 2 - Living with CAD.
Переглядів 74Рік тому
RARE REV-inar Episode 009 Understanding cold agglutinin disease (cad) Part 2 - Living with CAD.
RARE REV-inar Episode 009 Understanding cold agglutinin disease (cad) Part 1 - What is CAD?17:25RARE REV-inar Episode 009 Understanding cold agglutinin disease (cad) Part 1 - What is CAD?
RARE REV-inar Episode 009 Understanding cold agglutinin disease (cad) Part 1 - What is CAD?
Переглядів 102Рік тому
RARE REV-inar Episode 009 Understanding cold agglutinin disease (cad) Part 1 - What is CAD?
Allegra's Sing Me a Story Song4:34Allegra's Sing Me a Story Song
Allegra's Sing Me a Story Song
Переглядів 4Рік тому
Allegra's Sing Me a Story Song
Maddie's Sing Me a Story Song3:50Maddie's Sing Me a Story Song
Maddie's Sing Me a Story Song
Переглядів 17Рік тому
Maddie's Sing Me a Story Song
RARE REV-inar episode 008: Part 1 The power of the patient voice20:34RARE REV-inar episode 008: Part 1 The power of the patient voice
RARE REV-inar episode 008: Part 1 The power of the patient voice
Переглядів 19Рік тому
RARE REV-inar episode 008: Part 1 The power of the patient voice
RARE REV-inar episode 008: Part 2 The power of the patient voice23:02RARE REV-inar episode 008: Part 2 The power of the patient voice
RARE REV-inar episode 008: Part 2 The power of the patient voice
Переглядів 8Рік тому
RARE REV-inar episode 008: Part 2 The power of the patient voice
RARE REV-inar episode 008: Part 3 The power of the patient voice18:54RARE REV-inar episode 008: Part 3 The power of the patient voice
RARE REV-inar episode 008: Part 3 The power of the patient voice
Переглядів 12Рік тому
RARE REV-inar episode 008: Part 3 The power of the patient voice
RARE REV-inar Episode 007 Part 4 Mobile Research Nursing16:49RARE REV-inar Episode 007 Part 4 Mobile Research Nursing
RARE REV-inar Episode 007 Part 4 Mobile Research Nursing
Переглядів 96Рік тому
RARE REV-inar Episode 007 Part 4 Mobile Research Nursing
RARE REV-inar Episode 007 Part 3 Mobile Research Nursing12:47RARE REV-inar Episode 007 Part 3 Mobile Research Nursing
RARE REV-inar Episode 007 Part 3 Mobile Research Nursing
Переглядів 6Рік тому
RARE REV-inar Episode 007 Part 3 Mobile Research Nursing
RARE REV-inar Episode 007 Part 2 Mobile Research Nursing18:57RARE REV-inar Episode 007 Part 2 Mobile Research Nursing
RARE REV-inar Episode 007 Part 2 Mobile Research Nursing
Переглядів 6Рік тому
RARE REV-inar Episode 007 Part 2 Mobile Research Nursing
RARE REV-inar Episode 007 Part 1 Mobile Research Nursing7:48RARE REV-inar Episode 007 Part 1 Mobile Research Nursing
RARE REV-inar Episode 007 Part 1 Mobile Research Nursing
Переглядів 11Рік тому
RARE REV-inar Episode 007 Part 1 Mobile Research Nursing
RARE REV-inar episode 004 Part 4 Evolving treatments for Gaucher disease: Understanding gene therapy6:10RARE REV-inar episode 004 Part 4 Evolving treatments for Gaucher disease: Understanding gene therapy
RARE REV-inar episode 004 Part 4 Evolving treatments for Gaucher disease: Understanding gene therapy
Переглядів 12Рік тому
RARE REV-inar episode 004 Part 4 Evolving treatments for Gaucher disease: Understanding gene therapy
RARE REV-inar episode 004 Part 3 Evolving treatments for Gaucher disease: Understanding gene therapy7:53RARE REV-inar episode 004 Part 3 Evolving treatments for Gaucher disease: Understanding gene therapy
RARE REV-inar episode 004 Part 3 Evolving treatments for Gaucher disease: Understanding gene therapy
Переглядів 9Рік тому
RARE REV-inar episode 004 Part 3 Evolving treatments for Gaucher disease: Understanding gene therapy