Canadian Organization for Rare Disorders
Canadian Organization for Rare Disorders
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  • 24 261
Good to Go Implementing Canada’s Rare Disease Strategy Webinar Aug 21, 2024
Good to Go Implementing Canada’s Rare Disease Strategy Webinar Aug 21, 2024
มุมมอง: 127

วีดีโอ

CORD 24 Alexis T
มุมมอง 1034 หลายเดือนก่อน
CORD 24 Alexis T
CORD 24 Feneen D
มุมมอง 204 หลายเดือนก่อน
CORD 24 Feneen D
CORD 24 Ian S
มุมมอง 904 หลายเดือนก่อน
CORD 24 Ian S
CORD 24 Jennifer B
มุมมอง 374 หลายเดือนก่อน
CORD 24 Jennifer B
CORD 24 Sara E
มุมมอง 254 หลายเดือนก่อน
CORD 24 Sara E
CORD 24 Terry W
มุมมอง 364 หลายเดือนก่อน
CORD 24 Terry W
CORD 24 Reine H
มุมมอง 514 หลายเดือนก่อน
CORD 24 Reine H
CORD 24 Jane S
มุมมอง 914 หลายเดือนก่อน
CORD 24 Jane S
CORD 24 Amy M
มุมมอง 324 หลายเดือนก่อน
CORD 24 Amy M
CORD 24 François L
มุมมอง 204 หลายเดือนก่อน
CORD 24 François L
CORD 24 Alanna Y
มุมมอง 494 หลายเดือนก่อน
CORD 24 Alanna Y
Rare Disease 2022 Fall Conference - Day 2
มุมมอง 364 หลายเดือนก่อน
Rare Disease 2022 Fall Conference - Day 2
Rare Disease Fall 2022 Conference - Day 1
มุมมอง 554 หลายเดือนก่อน
Rare Disease Fall 2022 Conference - Day 1
Webinar: Applying Artificial Intelligence to Accelerate Rare Disease Diagnosis
มุมมอง 8210 หลายเดือนก่อน
Webinar: Applying Artificial Intelligence to Accelerate Rare Disease Diagnosis
Investing $1.5b in A Sustainable Rare Disease Ecosystem Webinar
มุมมอง 73ปีที่แล้ว
Investing $1.5b in A Sustainable Rare Disease Ecosystem Webinar
CORD & RQMO: Rare Disease Drug Strategy Webinar (French)
มุมมอง 79ปีที่แล้ว
CORD & RQMO: Rare Disease Drug Strategy Webinar (French)
CORD & RQMO: Rare Disease Drug Strategy Webinar (English)
มุมมอง 107ปีที่แล้ว
CORD & RQMO: Rare Disease Drug Strategy Webinar (English)
Rare Drug Conference June 2022 - Day 1
มุมมอง 81ปีที่แล้ว
Rare Drug Conference June 2022 - Day 1
Rare Drug Conference June 2022 - Day 2
มุมมอง 36ปีที่แล้ว
Rare Drug Conference June 2022 - Day 2
PMPRB NEW Guidelines and Impact on Rare Diseases
มุมมอง 205ปีที่แล้ว
PMPRB NEW Guidelines and Impact on Rare Diseases
CORD Webinar: Leave No One Behind
มุมมอง 622 ปีที่แล้ว
CORD Webinar: Leave No One Behind
Webinar: Rare Disease Centres of Excellence
มุมมอง 572 ปีที่แล้ว
Webinar: Rare Disease Centres of Excellence
Rare Disease Patient Registries: Key to Drug Development and Access
มุมมอง 1162 ปีที่แล้ว
Rare Disease Patient Registries: Key to Drug Development and Access
CORD Webinar: Lessons for a SMART Rare Drug System
มุมมอง 712 ปีที่แล้ว
CORD Webinar: Lessons for a SMART Rare Drug System
Application of RWE in Drug Access Decision Making
มุมมอง 342 ปีที่แล้ว
Application of RWE in Drug Access Decision Making
CORD Fall Conference 2021 Day 2
มุมมอง 502 ปีที่แล้ว
CORD Fall Conference 2021 Day 2
CORD Fall Conference 2021 Day 1
มุมมอง 642 ปีที่แล้ว
CORD Fall Conference 2021 Day 1
MP Shirley Bond RDD 2022 Statement
มุมมอง 292 ปีที่แล้ว
MP Shirley Bond RDD 2022 Statement
RDD Webinar Feb 2022
มุมมอง 1002 ปีที่แล้ว
RDD Webinar Feb 2022

ความคิดเห็น

  • @MuratGonullu-l3x
    @MuratGonullu-l3x 13 วันที่ผ่านมา

    Clark Carol Moore Ronald Thompson Joseph

  • @nahyaawada1714
    @nahyaawada1714 18 วันที่ผ่านมา

    How can it be called Canada's Rare Disease Strategy when it doesn't include any new or additional steps or special considerations beyond the existing complex matrix? It's very disappointing, especially after three decades of discussion on a rare disease strategy.

  • @maciekklein-saventichealth7333
    @maciekklein-saventichealth7333 10 หลายเดือนก่อน

    Great Webinar. Thank you very much!

  • @sumayaali7488
    @sumayaali7488 ปีที่แล้ว

    excellent talk

  • @VictorSinclair
    @VictorSinclair ปีที่แล้ว

    Great demonstration of courage Josie. Truthfully I have never heard of this day, but knowing how many unique diseases there are in the world it makes so much sence. Thank you for your courage and raising the bar on this issue. I think it needs a lot more publicity judging by the low amound of views. Keep fighting the good fight Josie. ~ The Positive Musicologist.

  • @SnookieGalore
    @SnookieGalore 3 ปีที่แล้ว

    Thanks for posting and sharing this.

  • @user-qw7ho2jq5c
    @user-qw7ho2jq5c 3 ปีที่แล้ว

    I am Abeer from Syria, I suffer from severe depression, please help me, I cannot find a cure in my country. I hope that every person who read my comment will help me.

  • @alyssafitzgerald2794
    @alyssafitzgerald2794 3 ปีที่แล้ว

    Hearing family stories about access, or lack of access, to treatments that work is incredibly heartbreaking. It should not be about whether you have the money or where you live!

  • @SnookieGalore
    @SnookieGalore 3 ปีที่แล้ว

    Health Canada approval process: Reciprocity with FDA and other trusted partners is a great idea. Time saver. Resource saver. Cost saver. Life saver.

  • @johnsonraymond7148
    @johnsonraymond7148 3 ปีที่แล้ว

    I want to first say I am thankful to God almighty for making me see this day and secondly to Dr.dohgo who restored my health back. I have been a Herpes virus patient for some time now, I have been running here and there looking for help/cure but none could help. I ran into a testimony by someone who testified how she was cured of a terrible disease by Dr.dohgo So I decided to contact the herbal doctor. I explained to him, and he said he can cure me. We started the process and he prepared herbs and sent them to me in my country and gave me directions on how I am to use it. I followed his directions and now To God be the glory he could cure me with his herbal mixture. I say once again thanks to Dr.dohgo for curing me of my Herpes with his herbs. And in case you want to be cured of your disease too you can contact email:( doctordohgo@ gmail . com) call Whatsapp Number +2347062142293 AND Dr.dohgo SAY HE HAVE CURE FOR THE FOLLOWING *CANCER *ALS *DIABETES *LUPUS *WEIGHT LOSS *GENITAL WARTS *MND e.t.c

  • @omoslingulin6869
    @omoslingulin6869 3 ปีที่แล้ว

    Hello Everyone out there,I am here to give my testimony about a Herbalist doctor who helped me.I was infected with in 2012, i went to many hospitals for cure but there was no solution, so I was thinking how can I get a solution out so that my body can be okay. One day I was in the river side thinking where I can go to get solution. so a lady walked to me telling me why am I so sad and i open up all to her telling her my problem, she told me that she can help me out, she introduce me to a doctor who uses herbal medication to cure FIBROSIS DISEASE and gave me his email, so i mail him. He told me all the things I need to do and also give me instructions to take, which I followed properly. Before I knew what is happening after two weeks the FIBROSIS DISEASE that was in my body got vanished . so if you are also heart broken and also need a help, you can also email him at {doctorojehomeofcure@gmail.com} or whatsapp him number: +2348119309706.Contact him today and you will have a testimony…Good luck!... DOCTOR OJE CAN AS WELL CURE THE FOLLOWING DISEASE:- 1. HIV/AIDS 2. HERPES 3. CANCER 4. ALS 5. HEPATITIS 6 DIABETES 7 LOVE SPELL 8 LUPUS 9 ALL TYPES OF INFECTION, THANKS TO DR OJE FOR THE GOOD HEALTH IN MY LIFE YOU ARE TRULY A BLESSING TO THE WORD. THANK YOU SIR ,

  • @bradhilton2283
    @bradhilton2283 3 ปีที่แล้ว

    Fuck the Toronto media you helped put me in a mental institution and over medicated me on socialized Medicean. Fuck Todd as well, This is such relief. Fuck the Toronto media!!

  • @bradhilton2283
    @bradhilton2283 3 ปีที่แล้ว

    Leave me alone

  • @bradhilton2283
    @bradhilton2283 3 ปีที่แล้ว

    Good now go fuck off ! Loser

  • @funwithwolfgirlhowl4041
    @funwithwolfgirlhowl4041 3 ปีที่แล้ว

    I have 18p- when I was little I can’t walk or talk I went to some where to help me walk and talk I

  • @eistenlawson2722
    @eistenlawson2722 3 ปีที่แล้ว

    I was diagnosed with Parkinson's disease nearly 4 years ago, at 51. I had a stooped posture, tremors, muscle stiffness, sleeplessness, slow movement. I was placed on Sinemet for 7 months and then Sifrol and Rotigotine was introduced which replaced the Sinemet but I had to stop due to side effects. Last year, I started on Parkinsons disease herbal treatment from Madida Herbal Clinic, this natural herbal treatment totally reversed my Parkinsons disease. WhatsApp *+2348071333118* or email: madidaherbalcenter@gmailcom. The treatment worked incredibly for my Parkinsons disease, i have a total decline in symptoms including tremors, stiffness, slow movement and others

  • @jackiem1011
    @jackiem1011 4 ปีที่แล้ว

    Just as Kenney decides it is necessary to cater to the privileged and privatize several services....timing couldn't be worse for this sweet boy. Obviously, Kenney doesn't have a heart, so it is critical that people get behind this movement.

  • @angelabrushett9652
    @angelabrushett9652 4 ปีที่แล้ว

    You might want to hold a fundraiser event involving your community and a celebrity to host the event.

  • @triciapope3503
    @triciapope3503 4 ปีที่แล้ว

    Can we start a GoFundMe? That might get you more than a petition!

    • @thomasmandzie7775
      @thomasmandzie7775 4 ปีที่แล้ว

      There is one at www.gofundme.com/f/kaysens-quest

  • @sassikatt
    @sassikatt 4 ปีที่แล้ว

    It took me 30 years to be diagnosed with a very rare thyroid deficiency, along with confirmation I have Hashimoto's Disease. I was originally diagnosed with 'low thyroid, no specific reason' and when the medication wasn't working, it was seen as my failure. The deficiency is Monodeiodinase Deficiency.

  • @reillyannexo
    @reillyannexo 4 ปีที่แล้ว

    Beautiful video and story.

  • @jaein91
    @jaein91 5 ปีที่แล้ว

    "Jordan is thriving", and killing/hunting innocent animals for fun. For someone who's learned that life is precious, he seems to have no problem killing other animals and depriving them of their lives. Not only that, he also sends his friends to attack women who call him out for his controversial social media posts and thrives on being an overall shitty human being. C'mon CORD, you guys are giving this man a platform? Gross.

  • @CORDRareDisorders
    @CORDRareDisorders 12 ปีที่แล้ว

    Please visit the Canadian Fabry Association for more information. You can find the link in the video description.

  • @iraqidolphin
    @iraqidolphin 12 ปีที่แล้ว

    Is ERT available for all Canadian's who have Fabry Disease?

  • @seanpaulgibbons
    @seanpaulgibbons 12 ปีที่แล้ว

    I have recently been diagnosed. I found your videos helpful. Thank you.