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Supporting Children Suffering from Narcolepsy
This week, we hear from FACES of Narcolepsy founder Erin Carey's - this is a truly inspiring story of love, support and fearless devotion. -------- I created FACES of Narcolepsy in 2017 when I joined forces with four other moms from across the U.S. to fill a need in the pediatric narcolepsy community
This week, we hear from FACES of Narcolepsy founder Erin Carey's - this is a truly inspiring story of love, support and fearless devotion. -------- I created FACES of Narcolepsy in 2017 when I joined forces with four other moms from across the U.S. to fill a need in the pediatric narcolepsy community
SaskiaHU
HealthUnlocked
in
HealthUnlocked Blog
1 year ago
Trelstar Mixject
I received an insurance denial today for Trelstar Mixject. I was to have an Eligard shot in early December, but Dr office called the day before to reschedule for January 3rd. I was never told that they wanted to take me off Eligard, and why would they change if it is working? Mainly, I have never
I received an insurance denial today for Trelstar Mixject. I was to have an Eligard shot in early December, but Dr office called the day before to reschedule for January 3rd. I was never told that they wanted to take me off Eligard, and why would they change if it is working? Mainly, I have never
280scout
in
Advanced Prostate Cancer
2 years ago
KEYNOTE-B96 Clinical trial
Hello, ladies. Is anyone on the KEYNOTE-B96? It's weekly Taxol plus Avastin plus Pembrolizumab/Placebo for platinum-resistant recurrent ovarian cancer.
Hello, ladies. Is anyone on the KEYNOTE-B96? It's weekly Taxol plus Avastin plus Pembrolizumab/Placebo for platinum-resistant recurrent ovarian cancer.
Vilinew
in
My Ovacome
1 year ago
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ORION -4
Wondering has anybody out there being offered the chance to do the clinical trial for a new drug called Inclisiran. It may be the answer to lower LDL cholesterol. I have been offered the chance and took up the offer anything to help.?
Wondering has anybody out there being offered the chance to do the clinical trial for a new drug called Inclisiran. It may be the answer to lower LDL cholesterol. I have been offered the chance and took up the offer anything to help.?
Sizzlerman
in
British Heart Foundation
1 year ago
Need clarification .............
Hi guys and gals, Just returned from a road trip to west Surrey - my sister and I discussed some family health issues resulting in her giving me a copy of my Dads death certificate. Can one of you or any of you clarify something for me ............ does or can atrial fibrillation progress/ convert
Hi guys and gals, Just returned from a road trip to west Surrey - my sister and I discussed some family health issues resulting in her giving me a copy of my Dads death certificate. Can one of you or any of you clarify something for me ............ does or can atrial fibrillation progress/ convert
Hidden
in
AF Association
2 years ago
Interesting
Clinical Review of ropeginterferon alfa-2b Suggests Amended Dosing Schedule May Support Improved Clinical Outcomes in Polycythemia Vera Review of studies published in Frontiers in Oncology highlights dosing considerations that may help more patients achieve earlier complete hematological response
Clinical Review of ropeginterferon alfa-2b Suggests Amended Dosing Schedule May Support Improved Clinical Outcomes in Polycythemia Vera Review of studies published in Frontiers in Oncology highlights dosing considerations that may help more patients achieve earlier complete hematological response
wateron
in
MPN Voice
1 year ago
Better measures of disease severity needed in lupus, study says
Experts urge change in ways of assessing clinical trial outcomes by Marisa Wexler, MS | February 16, 2023
New measures are needed to assess disease severity in lupus in clinical trials, a study highlights.
One important goal in developing such measures is to include patient-reported outcomes
Experts urge change in ways of assessing clinical trial outcomes by Marisa Wexler, MS | February 16, 2023
New measures are needed to assess disease severity in lupus in clinical trials, a study highlights.
One important goal in developing such measures is to include patient-reported outcomes
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
1 year ago
Are there any clinical trials currently using mRNA technologies to fight PC?
Still in the fight 13 years out using SBRT for tumors and Lupron and Xtandi for system wide control currently. Just wondering if there are any trials out there using mRNA technologies to harness the human immune system in the fight. Seems like a logical next step.
Still in the fight 13 years out using SBRT for tumors and Lupron and Xtandi for system wide control currently. Just wondering if there are any trials out there using mRNA technologies to harness the human immune system in the fight. Seems like a logical next step.
Rocketman1960
in
Advanced Prostate Cancer
1 year ago
What do you wish people knew about pancreatitis? | Rare Disease Day
This #RareDiseaseDay, bring awareness to chronic pancreatitis and inspire others to help find a cure by showing off your purple stripes! Leading up to #RareDiseaseDay, we'll be posting questions on our social media accounts to help others learn about the disease, starting with the question: What do you
This #RareDiseaseDay, bring awareness to chronic pancreatitis and inspire others to help find a cure by showing off your purple stripes! Leading up to #RareDiseaseDay, we'll be posting questions on our social media accounts to help others learn about the disease, starting with the question: What do you
Skye_MC
Administrator
in
Chronic Pancreatitis Support
1 year ago
Professor Kristien Boelaert appointed President-Elect of the British Thyroid Association
It might be of interest that the current President, Professor Simon Pearce (Newcastle), will be replaced sometime soon. [i]
Professor Kristien Boelaert appointed President-Elect of the British Thyroid Association
[/i] [i][/i] [i]A member of the BTA for more than 20 years, Professor Boelaert
It might be of interest that the current President, Professor Simon Pearce (Newcastle), will be replaced sometime soon. [i]
Professor Kristien Boelaert appointed President-Elect of the British Thyroid Association
[/i] [i][/i] [i]A member of the BTA for more than 20 years, Professor Boelaert
helvella
Thyroid UK
in
Thyroid UK
1 year ago
Silent AFib
Silent Arterial Fibrillation in a73 year old male with a normal heart rate (between 75-85 generally). Unfortunately it's permanent! Seeking advice from others in this same boat for thoughts of what to do or what they are doing/planning on as a treatment ? One specialist say Ablation. The next
Silent Arterial Fibrillation in a73 year old male with a normal heart rate (between 75-85 generally). Unfortunately it's permanent! Seeking advice from others in this same boat for thoughts of what to do or what they are doing/planning on as a treatment ? One specialist say Ablation. The next
marinoperna
in
AF Association
2 years ago
FILSPARI (sparsentan)
Hi All - Sorry if this has already been posted, but below is a copy and paste of an email I received from NephCure. Dear NephCure friends, Today marks an incredibly promising day for the rare kidney disease (RKD) community: the FDA has announced that the drug FILSPARI (sparsentan) has been granted
Hi All - Sorry if this has already been posted, but below is a copy and paste of an email I received from NephCure. Dear NephCure friends, Today marks an incredibly promising day for the rare kidney disease (RKD) community: the FDA has announced that the drug FILSPARI (sparsentan) has been granted
Boulder98
in
Kidney Disease
1 year ago
Beat Prostate Cancer
I was reading some clinical trial data the other day. To summarize, the treatment being tested did not pass muster. It worked marginally better than standard of care but not well enough to change standard of care. The irony of the study concerned overall survival and progression free survival. The control
I was reading some clinical trial data the other day. To summarize, the treatment being tested did not pass muster. It worked marginally better than standard of care but not well enough to change standard of care. The irony of the study concerned overall survival and progression free survival. The control
Todd1963
in
Advanced Prostate Cancer
1 year ago
đź“š Research 101: Placebos
A placebo is a sugar pill that does not cause harm or good. In many trials testing an investigational medication, a proportion of the people recruited will receive a placebo without knowing if they are receiving the investigational medication or the placebo. [u]
When you may not get a placebo
[
A placebo is a sugar pill that does not cause harm or good. In many trials testing an investigational medication, a proportion of the people recruited will receive a placebo without knowing if they are receiving the investigational medication or the placebo. [u]
When you may not get a placebo
[
AnnaHU
HealthUnlocked
in
Research Opportunities
1 year ago
Goat Weed - Neuroprotective
Neuroprotective
Epimedium has been shown to improve cognition and memory and to boost energy.
The anti-inflammatory and antioxidant effects of icariin in the brain reduce various conditions associated with neurodegeneration. This activity, combined with its ability to improve neuronal energy
Neuroprotective
Epimedium has been shown to improve cognition and memory and to boost energy.
The anti-inflammatory and antioxidant effects of icariin in the brain reduce various conditions associated with neurodegeneration. This activity, combined with its ability to improve neuronal energy
Gcf51
in
Cure Parkinson's
1 year ago
Upcoming Events of Interest
[i]Just received an announcement from our friends at MPN Advocacy & Education International of some interesting upcoming events. [/i] [u]
Webinars
[/u] A Conversation with an MPN Specialist: Everything You Should Know About Clinical Trials Tuesday, February 28, 2023 1:30 - 3:00 pm EST
[i]Just received an announcement from our friends at MPN Advocacy & Education International of some interesting upcoming events. [/i] [u]
Webinars
[/u] A Conversation with an MPN Specialist: Everything You Should Know About Clinical Trials Tuesday, February 28, 2023 1:30 - 3:00 pm EST
hunter5582
in
MPN Voice
1 year ago
IRL1117, Potential Improvement on Levodopa, May Enter Clinical Trial
IRLAB Therapeutics has selected a dopamine receptor agonist candidate called IRL1117 to advance as a Parkinson’s disease treatment, potentially as a longer-lasting alternative to levodopa with lesser side effects. IRL1117 is designed to be a once-daily oral therapy for the hallmark symptoms of Parkinson
IRLAB Therapeutics has selected a dopamine receptor agonist candidate called IRL1117 to advance as a Parkinson’s disease treatment, potentially as a longer-lasting alternative to levodopa with lesser side effects. IRL1117 is designed to be a once-daily oral therapy for the hallmark symptoms of Parkinson
Farooqji
in
Cure Parkinson's
1 year ago
I don't know what this Melatonin blurb is trying to say
From this article: Antioxidants and Prooxidants: Effects on Health and Aging 2020 https://www.hindawi.com/journals/omcl/2020/2360872/ This line: [u]
In addition, administration of melatonin to humans promoted reduction of COX-2 activity, nitrites and nitrates, and lipid peroxides that correlated with
From this article: Antioxidants and Prooxidants: Effects on Health and Aging 2020 https://www.hindawi.com/journals/omcl/2020/2360872/ This line: [u]
In addition, administration of melatonin to humans promoted reduction of COX-2 activity, nitrites and nitrates, and lipid peroxides that correlated with
Bolt_Upright
in
Cure Parkinson's
1 year ago
Newbie first post on here.
Morning all, hope everyone is well and warm this cold Sunday morning. Just thought I'd introduce myself as I've just recently joined the forum but I'm also on the bhf and health unlocked site too so here's a brief outline of my journey so far. I've been under the cardiologist for 3 years now with ectopics
Morning all, hope everyone is well and warm this cold Sunday morning. Just thought I'd introduce myself as I've just recently joined the forum but I'm also on the bhf and health unlocked site too so here's a brief outline of my journey so far. I've been under the cardiologist for 3 years now with ectopics
Taz70
in
Atrial Fibrillation Support
2 years ago
Choose Capivasertib or 177Lu-PSMA-617 clinical trial or stick with ADT + radiation?
Hi Folks, My PSA is up to 49 from 24 last summer. After bone scan, CT scan indicated 3 sites of mets (2 on pelvis, 1 on L5, overall “low volume”). Otherwise feeling great, working out most days. 58. I was finally able to get in this month to see a Medical Oncologist. Starting on ADT next week. Meeting
Hi Folks, My PSA is up to 49 from 24 last summer. After bone scan, CT scan indicated 3 sites of mets (2 on pelvis, 1 on L5, overall “low volume”). Otherwise feeling great, working out most days. 58. I was finally able to get in this month to see a Medical Oncologist. Starting on ADT next week. Meeting
LongTimeRunning
in
Advanced Prostate Cancer
1 year ago
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