RARE Revolution Magazine
RARE Revolution Magazine
  • Видео 99
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RARE REV-inar episode 014: Part 1 “Raising rare disease awareness in the LATAM region
This is part 1 “The importance of raising rare disease awareness in the LATAM region” of the webinar which originally aired on 19th November 2024 called “A blueprint to advance genomic medicine in Latin America”. Americas Health Foundation and Illumina provided funding for this meeting and had input on the meeting concept and the choice of speakers. For the rest of the videos and the full webinar please visit www.rarerevolutionmagazine.com
Overview
The webinar focused on advancing genomic medicine in Latin America, highlighting key challenges such as high costs, limited infrastructure, and insufficient trained human resources. Dr. Andres Moreno emphasized the importance of national genetic ...
Просмотров: 5

Видео

RARE REV-inar episode 014: Part 2 “Identifying implementation challenge in a blueprint in LATAM”11:52RARE REV-inar episode 014: Part 2 “Identifying implementation challenge in a blueprint in LATAM”
RARE REV-inar episode 014: Part 2 “Identifying implementation challenge in a blueprint in LATAM”
Просмотров 214 дней назад
This is part 2 “Identifying implementation challenge in a blueprint for genomic medicine in LATAM” of the webinar which originally aired on 19th November 2024 called “A blueprint to advance genomic medicine in Latin America”. Americas Health Foundation and Illumina provided funding for this meeting and had input on the meeting concept and the choice of speakers. For the rest of the videos and t...
RARE REV-inar episode 014: Part 3 Developing a blueprint & sharing experience/best practice in LATAM19:43RARE REV-inar episode 014: Part 3 Developing a blueprint & sharing experience/best practice in LATAM
RARE REV-inar episode 014: Part 3 Developing a blueprint & sharing experience/best practice in LATAM
Просмотров 114 дней назад
This is part 3 “Developing a blueprint and sharing experiences & best practices in LATAM” of the webinar which originally aired on 19th November 2024 called “A blueprint to advance genomic medicine in Latin America”. Americas Health Foundation and Illumina provided funding for this meeting and had input on the meeting concept and the choice of speakers. For the rest of the videos and the full w...
RARE REV-inar episode 014: Part 4 “Actionable next steps for genomic medicine in LATAM”17:30RARE REV-inar episode 014: Part 4 “Actionable next steps for genomic medicine in LATAM”
RARE REV-inar episode 014: Part 4 “Actionable next steps for genomic medicine in LATAM”
Просмотров 214 дней назад
This is part 4 “Looking ahead to a blueprint development & actionable next steps for genomic medicine in LATAM” of the webinar which originally aired on 19th November 2024 called“A blueprint to advance genomic medicine in Latin America”. Americas Health Foundation and Illumina provided funding for this meeting and had input on the meeting concept and the choice of speakers. For the rest of the ...
RARE REV-inar episode 012- Part 1 - Inherited metabolic disorders (IMD's)10:43RARE REV-inar episode 012- Part 1 - Inherited metabolic disorders (IMD's)
RARE REV-inar episode 012- Part 1 - Inherited metabolic disorders (IMD's)
Просмотров 215 месяцев назад
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
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
Просмотров 135 месяцев назад
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
Просмотров 95 месяцев назад
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
Просмотров 295 месяцев назад
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.
Просмотров 255 месяцев назад
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.
Просмотров 305 месяцев назад
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?
Просмотров 17 месяцев назад
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
7 месяцев назад
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
Просмотров 17 месяцев назад
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
7 месяцев назад
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
Просмотров 3510 месяцев назад
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
Просмотров 1410 месяцев назад
RARE REV-inar episode 011 - 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
Просмотров 1210 месяцев назад
RARE REV-inar episode 011 - 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.
Просмотров 5Год назад
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.
Просмотров 13Год назад
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?
Просмотров 27Год назад
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
Просмотров 38Год назад
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.
Просмотров 76Год назад
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?
Просмотров 109Год назад
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
Просмотров 4Год назад
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
Просмотров 17Год назад
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
Просмотров 19Год назад
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
Просмотров 8Год назад
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
Просмотров 12Год назад
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
Просмотров 96Год назад
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
Просмотров 6Год назад
RARE REV-inar Episode 007 Part 3 Mobile Research Nursing

Комментарии

  • @VedieAlbright
    @VedieAlbright 16 дней назад

    are there CE's associated with any of these webinars?

  • @bethwallace7488
    @bethwallace7488 2 месяца назад

    Wow. That is so sad. Have a blessed life.

  • @ronancollins29
    @ronancollins29 2 месяца назад

    I have SPS disease. I feel your pain when you get spasms and walking problems. GOD bless you 🙏

  • @photomodulin142
    @photomodulin142 2 месяца назад

    ruclips.net/video/e9FhpVG6LDI/видео.htmlsi=MI4jpCcLBW5uq4wm

  • @toxicbear4792
    @toxicbear4792 4 месяца назад

    Could someone help me with a question? I am dating a girl who's 36 years old. Who says she has crps, and because of that she cannot have sex. Is there signs or ways I can tell that she is telling the true. Or is she lying? Please help.

  • @Subject_Z8
    @Subject_Z8 5 месяцев назад

    I am a carrier to DMD

  • @Omega-X
    @Omega-X 6 месяцев назад

    I have PKU (moderate) and people never know the disease even exists sometimes people even doubt it have it at all (since they dont believe its a real thing) yes it was hard on my parents in the start but I’ve gotten my diet worked out and now for me and my level of pku its just a minor inconvenience.

  • @MMary777
    @MMary777 7 месяцев назад

    Thank you I have it to

  • @Whoknows376
    @Whoknows376 7 месяцев назад

    Wow I am so sorry that this happened to you

  • @elapaszczynski495
    @elapaszczynski495 8 месяцев назад

    Is this related to the vaccines?

  • @GregHuggett-so7wu
    @GregHuggett-so7wu 9 месяцев назад

    The point you make about , even doctors, not knowing about SPS and worse, ignoring it is a real problem. On the other hand I have an excellent neurologist who I would describe as an intellectual giant. I have seen just about every neurologist in Sydney (live in Australia) and I have to say overall I am getting first class treatment. My allied health workers (physios , OT speechies are also very good).

  • @stiffpersonsyndromeHeart2heart
    @stiffpersonsyndromeHeart2heart Год назад

    Thank you for helping me raise awareness on Stiff Person Syndrome 🙏🏻💕

  • @nash1072
    @nash1072 Год назад

    😘 P R O M O S M

  • @santokenaal3967
    @santokenaal3967 Год назад

    Great debate!

  • @lizblows7101
    @lizblows7101 Год назад

    Lea, if you're not in the UK & Ireland group, you should be. From Liz.

  • @leajabre
    @leajabre Год назад

    Thank you for taking people through what a big part of my life looks life, raising awareness on rare diseases such as Stiff Person Syndrome is key!

  • @jeffbutterfield9598
    @jeffbutterfield9598 Год назад

    Thanks for sharing, Glen. You've helped me so much over the last couple of years with my GPA even though our symptoms are different.