CURE ID
@cureid.bsky.social
Friends of CURE ID - the drug repurposing treatment registry. Special focus on infectious diseases, infection/associated conditions, rare cancers, and rare genetic diseases. Https://cure.ncats.io. Not an official account, views our own.
Thanks so much for sharing and providing these extra details about the ability for care partners to submit experiences! Also note that it’s a global registry so it’s open to patients and clinicians anywhere in the world. And you can follow cases as they get approved at cure.ncats.io/explore/case...
CURE-ID
cure.ncats.io
January 22, 2025 at 1:38 PM
Thanks so much for sharing and providing these extra details about the ability for care partners to submit experiences! Also note that it’s a global registry so it’s open to patients and clinicians anywhere in the world. And you can follow cases as they get approved at cure.ncats.io/explore/case...
Join the webinar and share your treatment experience on CURE ID today by going to: cure.ncats.io/pilot-overvi...
Cases that are submitted by Jan. 31st will be included in the first interim analysis!
Cases that are submitted by Jan. 31st will be included in the first interim analysis!
January 22, 2025 at 2:26 AM
Join the webinar and share your treatment experience on CURE ID today by going to: cure.ncats.io/pilot-overvi...
Cases that are submitted by Jan. 31st will be included in the first interim analysis!
Cases that are submitted by Jan. 31st will be included in the first interim analysis!
Featuring talks by:
Lauren Stiles, Dysautonomia International
Emily Taylor, Solve ME
Liza Fisher, Long COVID Alliance
Heather Stone, CURE ID - FDA
Dr. Keyla Tumas, CURE ID - NCATS/NIH
Come get your questions about the program answered!
Lauren Stiles, Dysautonomia International
Emily Taylor, Solve ME
Liza Fisher, Long COVID Alliance
Heather Stone, CURE ID - FDA
Dr. Keyla Tumas, CURE ID - NCATS/NIH
Come get your questions about the program answered!
January 22, 2025 at 2:26 AM
Featuring talks by:
Lauren Stiles, Dysautonomia International
Emily Taylor, Solve ME
Liza Fisher, Long COVID Alliance
Heather Stone, CURE ID - FDA
Dr. Keyla Tumas, CURE ID - NCATS/NIH
Come get your questions about the program answered!
Lauren Stiles, Dysautonomia International
Emily Taylor, Solve ME
Liza Fisher, Long COVID Alliance
Heather Stone, CURE ID - FDA
Dr. Keyla Tumas, CURE ID - NCATS/NIH
Come get your questions about the program answered!
Please share with others in the dysautonomia, ME and LC communities! The more patients enroll, the more we can learn about which trmts are helping people with specific symptoms, and treatments that aren't helping. This data will be used to help inform federal agencies on research priorities for RCTs
January 22, 2025 at 2:26 AM
Please share with others in the dysautonomia, ME and LC communities! The more patients enroll, the more we can learn about which trmts are helping people with specific symptoms, and treatments that aren't helping. This data will be used to help inform federal agencies on research priorities for RCTs
Register for the Zoom webinar at:
bit.ly/CureIDwebinar
Date: January 23, 2025
Time: 7-8pm Eastern
If you can't tune in during the live broadcast, you can register for the webinar to receive an email copy of it after the live broadcast.
bit.ly/CureIDwebinar
Date: January 23, 2025
Time: 7-8pm Eastern
If you can't tune in during the live broadcast, you can register for the webinar to receive an email copy of it after the live broadcast.
Welcome! You are invited to join a webinar: CURE ID Webinar. After registering, you will receive a confirmation email about joining the webinar.
Join Dysautonomia International for a free webinar on Thursday January 23rd, from 7-8pm Eastern, to learn about the CURE ID study we and many other Long COVID and ME/CFS advocacy groups have been work...
bit.ly
January 22, 2025 at 2:26 AM
Register for the Zoom webinar at:
bit.ly/CureIDwebinar
Date: January 23, 2025
Time: 7-8pm Eastern
If you can't tune in during the live broadcast, you can register for the webinar to receive an email copy of it after the live broadcast.
bit.ly/CureIDwebinar
Date: January 23, 2025
Time: 7-8pm Eastern
If you can't tune in during the live broadcast, you can register for the webinar to receive an email copy of it after the live broadcast.
We'll get a sneak peek at some of the research results available so far and we'll hear from some of the advocacy orgs involved in designing the study on what they hope to get out of the study for their patient community.
January 22, 2025 at 2:26 AM
We'll get a sneak peek at some of the research results available so far and we'll hear from some of the advocacy orgs involved in designing the study on what they hope to get out of the study for their patient community.
Please continue to help us spread the word about CURE ID so it can be an effective resource for patients, caregivers/partners and clinicians alike!
a thank you card with a wreath of flowers and leaves
ALT: a thank you card with a wreath of flowers and leaves
media.tenor.com
January 3, 2025 at 5:36 PM
Please continue to help us spread the word about CURE ID so it can be an effective resource for patients, caregivers/partners and clinicians alike!
Improvement is a continuous process and we know there is more work to be done. However, we hope we have been able to incorporate insights from a number of users to bring our visitors an improved experience and to have CURE ID bring value to the patient and medical community! /5
January 3, 2025 at 5:36 PM
Improvement is a continuous process and we know there is more work to be done. However, we hope we have been able to incorporate insights from a number of users to bring our visitors an improved experience and to have CURE ID bring value to the patient and medical community! /5
Those interested in reporting their treatment experiences for #LongCovid, #Sarcoma, #RASopathies, and #InfectiousDiseases, or who wish to update their previously entered cases, are continued to be encouraged to do so. The more experiences shared, the more valuable the data. /4
January 3, 2025 at 5:36 PM
Those interested in reporting their treatment experiences for #LongCovid, #Sarcoma, #RASopathies, and #InfectiousDiseases, or who wish to update their previously entered cases, are continued to be encouraged to do so. The more experiences shared, the more valuable the data. /4
You can now share treatments with off-label drugs for any disease on CURE ID using the Other Diseases form or our new generic cancer & genetic disease forms. A generic form for Infection-Associated Conditions besides Long COVID is in development (e.g., ME, Dysautonomia, etc.) /3
January 3, 2025 at 5:36 PM
You can now share treatments with off-label drugs for any disease on CURE ID using the Other Diseases form or our new generic cancer & genetic disease forms. A generic form for Infection-Associated Conditions besides Long COVID is in development (e.g., ME, Dysautonomia, etc.) /3
We have striven to make the site easier to navigate and to provide users more info about the value the data in CURE ID has to help find treatments. See why it is so important for patients, caregivers/partners, and healthcare providers to share their treatment experiences. /2
January 3, 2025 at 5:36 PM
We have striven to make the site easier to navigate and to provide users more info about the value the data in CURE ID has to help find treatments. See why it is so important for patients, caregivers/partners, and healthcare providers to share their treatment experiences. /2