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Global DARE Foundation
Registrace 7. 06. 2020
Welcome to the Global DARE Foundation's CZcams Channel.
Global DARE Foundation's mission is to promote world-wide awareness and better quality of life for all who are diagnosed with Adult Refsum Disease. Our goal is to support research, education initiatives, awareness campaigns, and advocacy. Driving research is at the center of what we do because we DARE to believe there is a cure for Adult Refsum Disease.
As part of our mission we create educational videos on Adult Refsum Disease along with many of the underlying conditions such as Retinitis Pigmentosa, Anosmia, Peripheral Neuropathy, Hearing Loss, Ataxia, Skeletal Dysplasia and Ichthyosis.
Global DARE Foundation's mission is to promote world-wide awareness and better quality of life for all who are diagnosed with Adult Refsum Disease. Our goal is to support research, education initiatives, awareness campaigns, and advocacy. Driving research is at the center of what we do because we DARE to believe there is a cure for Adult Refsum Disease.
As part of our mission we create educational videos on Adult Refsum Disease along with many of the underlying conditions such as Retinitis Pigmentosa, Anosmia, Peripheral Neuropathy, Hearing Loss, Ataxia, Skeletal Dysplasia and Ichthyosis.
Presentation on the 2024 Updated Refsum Diet Guide
Following a strategic revamp of the Refsum diet, Eleanor Baldwin and Sarah Firman, expert dietitians from the Adult Inherited Metabolic Diseases team at Guys & St. Thomas Hospital, London, delivered a presentation unveiling the updated Refsum Diet Guidelines. These guidelines are based on the latest food testing program, generously funded by the Global DARE Foundation.
Learn more about Adult Refsum Disease at Global DARE Foundation's website: www.defeatadultrefsumeverywhere.org/
If you have any questions please contact Global DARE Foundation at info@globaldarefoundation.org
Learn more about Adult Refsum Disease at Global DARE Foundation's website: www.defeatadultrefsumeverywhere.org/
If you have any questions please contact Global DARE Foundation at info@globaldarefoundation.org
zhlédnutí: 244
Video
Louis's Refsum Fundraiser
zhlédnutí 52Před 8 měsíci
Recently, Louis, the nephew of a person with Refusm, took it upon himself to complete a fundraiser to benefit Global DARE. Louis has seen first hand the impact a Refsum diagnosis can have on a patient and their family. "I wanted to raise money because I think the sector that handles this is underfunded as people and even some doctors don’t know what this is or how to help manage/ treat it; ever...
DARE Fest 2023 - Mindfulness Webinar
zhlédnutí 56Před rokem
During DARE Fest 2023, Salima Dhanani, who is an experienced yoga and mindfulness instructor with a background in education and teaching, conducted the webinar designed to assist you in reaching your highest potential in all areas of your life. Watch Salima in this recording for a fun filled and engaging presentation where we explore how to go inwards where all the magic happens. In this engagi...
Refsum Disease - Susie's story
zhlédnutí 428Před rokem
Learn how Susie had textbook symptoms of Refsum at a very early age but wasn't diagnosed until she was 43. It took her collapsing and being admitted to the hospital before she received a diagnosis. She had over 10 hospitalization as a result. Did you know that one in 300 people who have Retinitis Pigmentosa also have Refsum disease? As Susie learned early diagnosis could have improved her quali...
Spice Rubbed Chicken Breast Recipe
zhlédnutí 37Před rokem
Global DARE Foundation's Treasurer, John DeMarco, demonstrates his Refsum cooking skills with this delicious chicken dish Share Your Refsum Compliant Recipes in a Video for the Refsum Community. Email videos to: info@globaldare.org Join the Global DARE Foundation in making a difference for the Refsum community. Visit our website at www.defeatadultrefsumeverywhere.org. Please share this video to...
Refsum Disease - Kerstin's story
zhlédnutí 161Před rokem
Learn how Kerstin was diagnosed with Retinitis Pigmentosa at 25 and wasn't diagnosed with Refsum until 24 years later. Did you know that one in 300 people who have Retinitis Pigmentosa also have Refsum disease? As Kerstin learned, early diagnosis could have improved her quality of life. Dietary therapy can slow sight and hearing loss associated with Refsum and lessen other symptoms. Join the Gl...
Refsum Disease - Judy's story
zhlédnutí 318Před rokem
Learn how Judy was diagnosed with Retinitis Pigmentosa at 18 and wasn't diagnosed with Refsum until 32 years later at age 50. Did you know that one in 300 people who have Retinitis Pigmentosa also have Refsum disease? As Judy learned early diagnosis could have improved her quality of life. Dietary therapy can slow sight and hearing loss associated with Refsum and lessen other symptoms. Join the...
Refsum Disease - Kristie's story
zhlédnutí 149Před rokem
Before Kristie's Refsum diagnosis, she competed in Ironman level triathlons. Now she is on a mission to find a cure and improve lives. She is the founder of Global DARE Foundation. She was fortunate to receive her Refsum Diagnosis within 2 years and she has had no further vision loss since being on the Refsum low phytanic acid diet. Did you know that one in 300 people who have Retinitis Pigment...
Refsum Disease - Susan's story
zhlédnutí 88Před rokem
Learn how an early diagnosis has provided Susan a better quality of life and slowed symptom progression. She was fortunate to receive her Refsum Diagnosis within 2 years of receiving her Retinitis Pigmentosa diagnosis. Did you know that one in 300 people who have Retinitis Pigmentosa also have Refsum disease? Many are diagnosed with Refsum Disease 15-20 years after being diagnosed with Retiniti...
Refsum Disease - Mark's story
zhlédnutí 63Před rokem
Learn about Mark's Refsum journey and how he was diagnosed by chance from a young medical student after he collapsed and was admitted to the hospital. Luckily he received his diagnosis at 24 which allowed him to keep working until he was 60 when he retired. Did you know that one in 300 people who have Retinitis Pigmentosa also have Refsum disease? As Mark learned, early diagnosis made a differe...
Refsum Disease - Alan's story
zhlédnutí 50Před rokem
Learn how Alan was diagnosed with Retinitis Pigmentosa in 2003 and wasn't diagnosed with Refsum until he had lost most of his vision in 2016. Did you know that one in 300 people who have Retinitis Pigmentosa also have Refsum disease? As Alan learned early diagnosis could have improved his quality of life. Dietary therapy can slow sight and hearing loss associated with Refsum and lessen other sy...
Refsum Disease - Sharon's story
zhlédnutí 476Před rokem
Learn how Sharon was diagnosed with Retinitis Pigmentosa at 11 and wasn't diagnosed with Refsum until 40 years later. Did you know that one in 300 people who have Retinitis Pigmentosa also have Refsum disease? As Sharon learned early diagnosis could have improved her quality of life. Dietary therapy can slow sight and hearing loss associated with Refsum and lessen other symptoms. Join the Globa...
Refsum Disease - Early Diagnosis is Critical
zhlédnutí 236Před rokem
February 28th is recognized internationally as rare disease day, and the Global DARE Foundation is here to Defeat Adult Refsum Everywhere. Did you know that one in 300 people who have Retinitis Pigmentosa also have Refsum disease? Dietary therapy can slow sight and hearing loss associated with Refsum and lessen other symptoms Join the Global DARE Foundation community by visiting DefeatAdultRefs...
Refsum Disease - We DARE to Believe
zhlédnutí 1,1KPřed 2 lety
At DARE Fest 2022, Global DARE Foundation released its "We DARE to Believe" video produced by a student team at Seton Hall. In this short and inspiring video, you will learn from patients, clinicians and researchers about Refsum Disease and how they are on a race for cure. Learn more about Adult Refsum Disease at Global DARE Foundation's website: www.defeatadultrefsumeverywhere.org/ If you have...
Meet Global DARE Foundation
zhlédnutí 94Před 2 lety
At DARE Fest 2022, Global DARE Foundation's President, Kristie DeMarco, talks about how she became an advocate for Refsum Disease and how the foundation is achieving its mission on improving the quality of life of those with Refsum Disease. Learn more about Adult Refsum Disease at Global DARE Foundation's website: www.defeatadultrefsumeverywhere.org/ If you have any questions please contact Glo...
Part 1: Why are Metabolomic and Lipidomic studies important to Refsum Disease research?
zhlédnutí 64Před 2 lety
Part 1: Why are Metabolomic and Lipidomic studies important to Refsum Disease research?
Food Label Reading for Adult Refsum Disease
zhlédnutí 254Před 2 lety
Food Label Reading for Adult Refsum Disease
Illness and Fasting for Adult Refsum Disease
zhlédnutí 151Před 2 lety
Illness and Fasting for Adult Refsum Disease
Part 2: Why are Metabolomic and Lipidomic studies important to Refsum Disease research?
zhlédnutí 35Před 2 lety
Part 2: Why are Metabolomic and Lipidomic studies important to Refsum Disease research?
Refsum Clinic at Guy's and St. Thomas Hospital
zhlédnutí 155Před 2 lety
Refsum Clinic at Guy's and St. Thomas Hospital
Adult Refsum Disease: Introduction to Food Testing
zhlédnutí 76Před 2 lety
Adult Refsum Disease: Introduction to Food Testing
Why are mouse models studies important to Refsum Disease research?
zhlédnutí 49Před 2 lety
Why are mouse models studies important to Refsum Disease research?
Adult Refsum Disease - Patient Experience Panel
zhlédnutí 34Před 2 lety
Adult Refsum Disease - Patient Experience Panel
Adult Refsum Disease - Patient Experience Panel
zhlédnutí 34Před 2 lety
Adult Refsum Disease - Patient Experience Panel
Wie gehen Sie mit der Seh-und Hörschwäche um? Bekommt man eine spezielle Brille, Hörgerät? Oder bringt das alles nichts? Gute Besserung
This is really good video! Thank you ❤
Is regular monitoring of bloods needed?
Apple in the tree not in my hands
Mr. Can you give address and other details
Miss can you give address and other details
It is really useful to all of us
Thanks mrs. Kriste
Thank you for sharing your story Susie. That was very informative.
Thank you Judy and Global DARE foundation for raising awareness, currently a medical student, we learned about this very briefly, found your series and hope to be able to help patients much like Judy diagnose, treat, and prevent the progressive nature of the disease sooner rather than later.
I need guidance for my child for infantile refsum disease.
❤thank you for making this video
Thanks Kristie
Good method of teaching 👏 Thanks sir
🙂 𝔭𝔯𝔬𝔪𝔬𝔰𝔪
quelle est le taux d'acide phytanique moyen ( journalier ) qu'un patient n'ayant pas le syndrome de Refsum as dans son organisme ?
thank you so much for the information