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congenitalhi
เข้าร่วมเมื่อ 21 พ.ค. 2013
CHI is a leading nonprofit dedicated to improving the lives of children and adults living with Congenital Hyperinsulinism (HI).
CHI provides a world of information, resources, and support to the HI community. CHI advocates on behalf of patients for better treatments and access to care. CHI is dedicated to increasing awareness of the disorder as it leads to more timely diagnosis and the best outcomes for patients. CHI supports medical research for improved therapies, potential cures, and timely diagnosis. CHI works globally because we are stronger as an international community. Cooperation across borders fosters important advances in medicine.
HI is a life-threatening disorder that causes dangerously low blood sugar levels. Prolonged or severe low blood sugar can cause seizures, brain damage, and even death. We hope you will partner with us to prevent damage and death, search for better treatments, and improve the quality of life for all HI patients.
CHI provides a world of information, resources, and support to the HI community. CHI advocates on behalf of patients for better treatments and access to care. CHI is dedicated to increasing awareness of the disorder as it leads to more timely diagnosis and the best outcomes for patients. CHI supports medical research for improved therapies, potential cures, and timely diagnosis. CHI works globally because we are stronger as an international community. Cooperation across borders fosters important advances in medicine.
HI is a life-threatening disorder that causes dangerously low blood sugar levels. Prolonged or severe low blood sugar can cause seizures, brain damage, and even death. We hope you will partner with us to prevent damage and death, search for better treatments, and improve the quality of life for all HI patients.
How to Join the HI Global Registry: Instructions for Participants
Need help with joining the HI Global Registry? If you have HI, this step-by-step video will guide you through the entire process of joining the HI Global Registry as a participant. If you do not have HI but you care for someone with HI, we have a different registration video that walks through the steps of joining as a caregiver instead!
The HI Global Registry (HIGR) is the only patient-powered hyperinsulinism registry. Joining HIGR is one way that people with HI or their caregivers can directly contribute to HI research and help to improve the lives of people with HI. In this video, Lauren Lopez, Registry Director, provides step-by-step instructions on joining the registry as a caregiver for someone with HI.
About CHI:
CHI, a 501(c)3, is a global organization dedicated to supporting children and adults born with HI. CHI is a leading source of funding for research for better treatments and cures, and the foremost advocate for increased awareness and better medical protocols for HI to reduce preventable brain damage and death from prolonged hypoglycemia.
The HI Global Registry (HIGR) is the only patient-powered hyperinsulinism registry. Joining HIGR is one way that people with HI or their caregivers can directly contribute to HI research and help to improve the lives of people with HI. In this video, Lauren Lopez, Registry Director, provides step-by-step instructions on joining the registry as a caregiver for someone with HI.
About CHI:
CHI, a 501(c)3, is a global organization dedicated to supporting children and adults born with HI. CHI is a leading source of funding for research for better treatments and cures, and the foremost advocate for increased awareness and better medical protocols for HI to reduce preventable brain damage and death from prolonged hypoglycemia.
มุมมอง: 9
วีดีโอ
How to Join the HI Global Registry: Instructions for Caregivers
มุมมอง 96 หลายเดือนก่อน
Need help with joining the HI Global Registry? If you are the caregiver for someone with HI, this step-by-step video will guide you through the entire process of joining the HI Global Registry as a caregiver. If you have HI, we have a different registration video that walks through the steps of joining as a participant instead! The HI Global Registry (HIGR) is the only patient-powered hyperinsu...
Jonah's HI-story
มุมมอง 917 หลายเดือนก่อน
Jonah Shusterman, a teenager from the USA with hyperinsulinism (HI), sat down with CHI CEO Julie Raskin to share his story growing up with HI. Share your HI-Story with CHI: congenitalhi.org/histories/ Music Credit: Upbeat Corporate Inspirational (loop) by AudioCoffee License: freesound.org/people/AudioCoffee/sounds/717286/ Changes made: the song was cut and shortened from the original version. ...
Sugar Surgery
มุมมอง 510 หลายเดือนก่อน
A presentation by Professor Craig McBride, PhD FRACS FACS at the 2023 Congenital Hyperinsulinism International Family Meeting Day in Brisbane, Australia
Selyn's HI-Story
มุมมอง 514ปีที่แล้ว
Antoanela Androne, Selyn's mother, sat down with Julie Raskin, Executive Director of CHI, to share a little about her family's HI journey. Share your HI-Story with CHI: congenitalhi.org/histories/ Music Credit: Furry Friends by Scott Holmes Music License: bit.ly/3IQp1Hx Changes made: the song was cut and shortened from the original version. About CHI CHI, a 501(c)3, is a global organization ded...
Omar's HI Story
มุมมอง 148ปีที่แล้ว
Thank you to Zoohra, an HI mom and physician, for sitting down with Julie Raskin, CHI Executive Director, Ito share her son Omar's HI-story. Omar began showing signs and symptoms of HI after he was switched from formula to cow's milk. After a long diagnostic journey, he received an HI diagnosis from the Children's Hospital of Philadelphia, a CHI Center of Excellence. Zoohra talked about being i...
Remy's HI-Story
มุมมอง 2772 ปีที่แล้ว
Kies Motorsports donated $12,000 to CHI in honor of Remy Montemurro. Remy was diagnosed with HI within his first week of life. Jeff and Justyna Montemurro, Remy's parents, sat down with Julie Raskin, Executive Director of CHI, to share a little about their family's HI journey. Their friends at Keis Motorsports knew about the Montemurro's journey over the past year, so they reached out to pick a...
Jennifer's HI-Story
มุมมอง 1842 ปีที่แล้ว
Learn the HI-Story of Jennifer, an HI mom who learned she had HI after her daughter's diagnosis. Share your HI-Story with CHI: congenitalhi.org/histories/ Music Credit: Furry Friends by Scott Holmes Music License: bit.ly/3IQp1Hx Changes made: the song was cut and shortened from the original version. About CHI CHI, a 501(c)3, is a global organization dedicated to supporting children and adults b...
Cali's HI-Story
มุมมอง 4252 ปีที่แล้ว
Share your HI-Story with CHI: congenitalhi.org/histories/ Music Credit: Furry Friends by Scott Holmes Music License: bit.ly/3IQp1Hx Changes made: the song was cut and shortened from the original version. About CHI CHI, a 501(c)3, is a global organization dedicated to supporting children and adults born with HI. CHI is a leading source of funding for research for better treatments and cures, and...
ABCC8/KCNJ11 Diazoxide-Unresponsive HI without Pancreatectomy
มุมมอง 3363 ปีที่แล้ว
Hi By Type Video: ABCC8/KCNJ11 Diazoxide-Unresponsive HI without Pancreatectomy
ABCC8 Non-Diazoxide Responsive with Pancreatectomy
มุมมอง 2343 ปีที่แล้ว
HI By Type Video: ABCC8 Non-Diazoxide Responsive with Pancreatectomy
Diazoxide-Responsive Negative Genetics Diffuse HI
มุมมอง 4563 ปีที่แล้ว
Diazoxide-Responsive Negative Genetics Diffuse HI
Partially Diazoxide-Responsive Negative Genetics Diffuse HI
มุมมอง 1673 ปีที่แล้ว
Partially Diazoxide-Responsive Negative Genetics Diffuse HI
"Down and Up" Virtual Singalong - Sugar Soiree 2020
มุมมอง 803 ปีที่แล้ว
"Down and Up" Virtual Singalong - Sugar Soiree 2020
"Down and Up" - CHI Collaborative Research Network Virtual Convening Happy Hour
มุมมอง 393 ปีที่แล้ว
"Down and Up" - CHI Collaborative Research Network Virtual Convening Happy Hour
"Down and Up" - Congenital Hyperinsulinism International
มุมมอง 1.5K4 ปีที่แล้ว
"Down and Up" - Congenital Hyperinsulinism International
Congenital Hyperinsulinism International - Rare Disease Day 2020 Convening
มุมมอง 1374 ปีที่แล้ว
Congenital Hyperinsulinism International - Rare Disease Day 2020 Convening
Million Dollar Bike Ride - Interview with Julie Krcmaic
มุมมอง 225 ปีที่แล้ว
Million Dollar Bike Ride - Interview with Julie Krcmaic
Just wondering what typical test need to be done for CHI? Just check blood sugar routinely? My daughter also has RTS 2
Hello, Please you can translate into French.
hello, I would like you to translate it into French, thank you very much
Traduction please 😊
Hello
made my day!!!! how sweet <3
my little sis has rts
can’t imagine not having access to treatment for my babies HI. 😭
god bless her 👏🏼
I would like to know more about your case. How long did you take Diazoxide and side effects?
My daughter is 7 months old and was diagnosed with hyperinsulunism. She is on Diazoxide and she is having side effects as hair growth on her face, legs and arms. In really worried about it 🥺
HI! Keep in touch with us by joining our mailing list - congenitalhi.org and we can keep you informed about events. You can also join our Facebook support forum here:facebook.com/groups/hyperinsulinismsupport
I live in Germany and I also have a son who is 8 years old, it is great to find people who have the same problems especially who do not know a lot about this syndrome thank you for sharing your experience
HI! Keep in touch with us by joining our mailing list - congenitalhi.org and we can keep you informed about events. You can also join our Facebook support forum here:facebook.com/groups/hyperinsulinismsupport
Thank you so much for sharing your story. I had no idea diazoxide has been around so long. I was so afraid of my newborn being on it because of things I’ve read but your story is encouraging.
Glad it was helpful!
Thanks for the encouraging story.
Hi I’m assuming that your experience this? If so let’s connect. My newborn is experiencing this now
You are so welcome
You can join our Facebook support forum as well - facebook.com/groups/hyperinsulinismsupport. It is moderated at limited to families and patients with HI!
Thanks for this positive experience sharing 👍😚
i want to register for the program being the father of a HI kid.please tell me how
Join our mailing list - congenitalhi.org and we can keep you informed about events. You can also join our Facebook support forum here:facebook.com/groups/hyperinsulinismsupport
I was born with Ruebenstein taybi syndrome as well I just found your channel I just subbed
Hi . My youngest son was born with RTS type 2 . He is 2 years old .Has some development delays . We are living in Markham Ontario. Would like to subscribe and share experience . Thanks .
@@MrPolkovnik777 yes
Interesting to share experience how to grow up children with Rubinstein Taiby Syndrome . My youngest son has RTS type2. Thanks.
Great!!!