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Rare Diseases Are Our Focus, Expertise, and Passion.

CheckRare is a learning platform for healthcare professionals and the rare disease community. We provide expert discussions regarding rare diseases, current and emerging therapies, clinical trials, advocacy, and BioPharma companies.
CTCL Overview (Chapter 1)
3:48
19 часов назад
Treatment Plans for CTCL (Chapter 2)
4:52
19 часов назад
Challenges of Hypoparathyroidism
6:53
14 дней назад
Living With Stiff Person Syndrome
15:27
21 день назад
Recordati Rare Diseases
8:00
28 дней назад
Overview of Hypoglycemia
4:21
Месяц назад
Комментарии
@coraldell3091
@coraldell3091 15 часов назад
What is AMT - 130
@TinaMehling-o1k
@TinaMehling-o1k 2 дня назад
I was a little bit scared about my herpes virus, not until I came across Dr Ikpoko on RU-vid who cured me off Genital Warts within a month
@kristibrown1164
@kristibrown1164 2 дня назад
biggest lie ever cause there is no cure and all the medications only cause more side effects along with financially breaking the patient and every doctor receives funding by pharmaceutical companies and transplants make daily life unbearable
@khaledissa2021
@khaledissa2021 3 дня назад
AUSEM illustration thanks
@_heyimbritt
@_heyimbritt 4 дня назад
No Doctor I have had investigates the after effects. You’re so right it is looked at one and done after the steroids and PLEX.
@clean_rene
@clean_rene 5 дней назад
Relate to every word of this. 😢
@willieknows2708
@willieknows2708 6 дней назад
Gratitude 🤲 Your Way.
@yesubabuduvvu8007
@yesubabuduvvu8007 8 дней назад
Pls give any update dnm1 and nsf gene therapy?
@user-rs2bn8oe7u
@user-rs2bn8oe7u 10 дней назад
My son has this disease. He is now 6 months old and has taken his first dose of treatment
@RandomHuTaoSimp
@RandomHuTaoSimp 12 дней назад
There actually is a cure. it's called the carnivore diet. If you put anyone with rett syndrome on a strict, all beef and eggs only (grass fed and finished) diet, over the course of 3 to 5 years, they'll be completely cured of this neurological disease/ condition and this also applies to prevention to which is why you start your kinds on animal based diet.
@franzjackson7625
@franzjackson7625 12 дней назад
Good video
@godzilla_of_HouseTargaryen
@godzilla_of_HouseTargaryen 13 дней назад
Too expensive .make it free ? Noone is going to buy this at the cost . No patients are rich
@mhassanrana4298
@mhassanrana4298 13 дней назад
I have been diagnosed with CMT since my early childhood, and now i am 24, facing difficulty while taking stairs, foot drop, and weakness in the hands, but still i manage to live with it. I am an ACCA finalist, and now just three papers are remaining to become a fully qualified accountant. Furthermore, i am also a bike enthusiast who successfully managed to drive a 150cc bike and, for the past two years, also had gone on the mountains side bike tour, approximately 1000 km long distance covered. Never lose hope. Believe in yourself.
@kr7_635
@kr7_635 16 дней назад
Hemlibra did change the structure of hemophilia once in a month did normal to a person with hemophilia ❤🎉
@noemartinez2265
@noemartinez2265 17 дней назад
Hello is this USA based?
@ANGELSORPHANAGE
@ANGELSORPHANAGE 17 дней назад
I would likely to be in touch with you so that we help the poor ones who are suffering in such diseases 😢😢😢
@ANGELSORPHANAGE
@ANGELSORPHANAGE 17 дней назад
Wow , that's beautiful
@yesubabuduvvu8007
@yesubabuduvvu8007 18 дней назад
Do video dnm1 reserch and nsf gene reserch
@dr.aishapediatric6612
@dr.aishapediatric6612 18 дней назад
Good luck
@JanakiJanaki-bg9nn
@JanakiJanaki-bg9nn 20 дней назад
Sir.mps2 patient age 30 Please exercise in tamil please🙏🙏🙏🙏🙏
@dulcineagonzales6311
@dulcineagonzales6311 21 день назад
What is another name for macitentan?
@s.baldev7765
@s.baldev7765 21 день назад
Hello. Will labs develop a pill that can be swallowed to replace the deficiency that Alpha. 1 Antitrypsin Deficiency causes ? This would be an amazing breakthrough to help people.
@adorablesoccer5777
@adorablesoccer5777 21 день назад
I’m 15 and I have EDS I’m on a walk rn because I found that they help to clear my head my hip and back are killing me and my parents had to call an ambulance for me two days ago because I was screaming in pain due to sleeping on my leg wrong..I had an xray and an ultrasound and they found nothing and I was only given Tylenol (which does absolutely nothing for pain) it sucks because doctors think I am just trying to get drugs and I am but it’s to help with the debilitating pain that I deal with on a daily basis..I cry everyday and some days can’t even get out of bed because of it and it feels like none of my friends understand me and they all think I’m weird but I know it isn’t my fault that I have this and that I am lucky my parents listened to me when I said I was in pain and are trying there best to get me help
@ericastanton2010
@ericastanton2010 22 дня назад
MY DAD SLEEPS ALL THE TIME, HAS COGNITIVE IMPAIR, SLURRED SPEECH, CHEWING ISSUES, SWALLOWING ISSUES, SHUFFLING GAIT ALL OVER PAST 2-3 YEARS. UNREMARKABLE mri AND CT HEAD. NEVER CHECKED FOR MYASTHENIA GRAVIS BECAUSE NEUROLOGIST DID NOT BELIEVE SINCE NO OCULAR INVOLVEMENT. WHAT DO YOU THINK?
@WendyGulla
@WendyGulla 22 дня назад
This was so well done Lea! You are a fighter & inspiration to me! So happy to call you my friend! I will share this for sure! Love you!❤
@stiffpersonsyndromeHeart2heart
@stiffpersonsyndromeHeart2heart 22 дня назад
Love you right back 💕😘🤗
@ANGELSORPHANAGE
@ANGELSORPHANAGE 24 дня назад
You can help us in donation our orphanage
@andrewreyes4701
@andrewreyes4701 24 дня назад
Have you heard of SCA 17? I was just diagnosed with this today
@kasspriscilla9350
@kasspriscilla9350 27 дней назад
Are you talking about kuvan?
@HiHoSilvey
@HiHoSilvey 29 дней назад
Does anyone have symptoms of autonomic neuropathy with CMT? I have a normal heart with arrhythmia. I've just read a research paper about autonomic neuropathy in CMT and that it can be a cause of irregular heartbeats. I also have PEM, Post Exertion Malaise which is a sign of chronic fatigue syndrome. I thought that's what I had on the side but now I've just read that PEM can also be related to CMT. This is by far my worst symptom. I'm only mildly afflicted compared to others I have read about. I have high arched feet and hammer toes. My arms are not particularly weak and I don't have problems with my hands. My legs are weak, but I can walk well. I just basically don't feel very good. I'm 71 and was misdiagnosed with CIDP back in 2001. I have only just been correctly diagnosed with CMT.
@GPHealthandWellbeing
@GPHealthandWellbeing Месяц назад
Hearing your lived experince makes it much easier to appreciate the impact of MG. Thank for sharing ❤ Wishing you good health.
@jessicahenderson5081
@jessicahenderson5081 Месяц назад
My son has just been diagnosed with HSAN 6 he is only 10 He has neuropathy on feet He is also diagnosed with autism We are seeing genetic counselor He has had numerous foot wounds and his ankles are swollen
@dianajones8598
@dianajones8598 Месяц назад
Thank you for your testimony.
@sandraekhoff8937
@sandraekhoff8937 Месяц назад
Love your hair Dr.!!!🤗
@warondogs8199
@warondogs8199 Месяц назад
as if she cares
@user-dg2um2vx8v
@user-dg2um2vx8v Месяц назад
polycythemia vera jak2Dr. Rulisent is giving medicine, does this disease get cured by taking this medicine, is there any other countries treatment for this disease , please tell
@tinaraj4340
@tinaraj4340 Месяц назад
Can't wait Alan
@marlacehughes548
@marlacehughes548 Месяц назад
As a parent that had a child die of MLD it must start with newborn screening!
@medicallover8285
@medicallover8285 Месяц назад
Why bone marrow suppression occure in PNH..
@KamranKhan-gq2iw
@KamranKhan-gq2iw Месяц назад
My son has suspected farbers disease i am from pakistan. Could u plz guide or help. He is 5 months of age
@raurumd
@raurumd Месяц назад
for boards remember it's diagnosed with DNA analysis for MECP2 gene
@user-xt6oh1wx1s
@user-xt6oh1wx1s Месяц назад
Does the bone marrow transplant concedred as treatment my nephew has the disease and we worry , we need the real treatment not cortisol . If bone marrow transplant can heal her please answer
@KamranKhan-gq2iw
@KamranKhan-gq2iw Месяц назад
Same with my son. We are so worried about him.
@towsifhossain2010
@towsifhossain2010 Месяц назад
How do you diagnose enteric hyper oxalate disorder??
@Imunique08
@Imunique08 Месяц назад
What test gives this diagnosis
@RAINYDAYS00505
@RAINYDAYS00505 Месяц назад
Do you have atrophy on one side of your face?
@cr528
@cr528 Месяц назад
My lesion was on my scalp..all good now.. subcu T cell here.
@renzo6490
@renzo6490 Месяц назад
During a check of my enlarged prostate gland in 2019, my doctor noticed some unusual changes in the skin just inside my anus. He said that it bore watching... Then came Covid and routine medical care was set aside as clinics and hospitals were swamped with patients. Everything was Covid! Hand washing, social distancing,masks. My strange cells were forgotten. Time passed. Then, again during a check of my prostate, a different doctor felt a definite growth and ordered a biopsy. It came back positive for stage one anal cancer caused by HPV exposure. Stage one means that the cancer had not spread from its original place. Prospects for cure looked good. I underwent six weeks of radiation treatment. The first week included chemo. And the last week also included chemo. I began feeling the side effects of treatment around the fourth week. Fatigue, burning pain while passing urine and feces (shit). No nausea. No vomiting. But disorientation and weakness caused by dehydration. We concentrated on symptom relief. Lidocaine cream. Stool softeners. Diarrhea meds. Constipation meds. General pain meds. I finished treatment two weeks ago. Symptoms can even get worse once treatment is over. It can take up to a month for things to get back to something like normal. In about a month or so, I will be checked to see if the cancer is gone. And checked again at regular intervals. If the cancer ever returns, I will NOT go through chemo radiation again. I’m 78. Time to go. I’ll see what options I have for ending my life...as is my RIGHT!
@KS-ro5lx
@KS-ro5lx Месяц назад
I think i have this. I have congestion. it feels like it's in my esophagus.
@phill3727
@phill3727 Месяц назад
I'm in Boise Idaho I was diagnosed with Alpha 1 after I had some fat tissue necrosis with some calcifations. I had a couple abscesses on my hip. I am also diet controlled diabetic type 2 I have lupus also as well as Bechets disease. I am very interested in the shots, I have COPD and heart and kidney disease. The kidney disease is fairly stable I have had a high number of having pnumonia 30 times in. My life, my mother's family had bad lungs too always that and Anemia, my grandfather said we were Norse from Scotland and my mother also. I am always with anemia also. Your breakthrough sounds great. I have just always eaten in my. Diet more meat protein. I amin my early 60s and non smoker. I also lost my left leg below knee from enlarged veins of the foot. I will contact. Your company and tell my Dr's here in Idaho. Thank you truely giving us something hopeful what a wonderful company Thank you
@phill3727
@phill3727 Месяц назад
My Dr here sent a biopsy off to a dr in Seattle Washington and I have the diagnoses it took everyone with a bit of a shock too, but we manage highprotein helps I have had weird enzyme statistics in my blood with high levels of inflammatory markers I always wondered, thank you
@fatmaceylan259
@fatmaceylan259 Месяц назад
Türkçe çevirisi yokmu
@gymnasticlife1788
@gymnasticlife1788 Месяц назад
Hi. I am almost 50 years old and have spent most of my life desperately trying to figure out what is going on in our family. There is most definitely a genetic component and perhaps not to the severity of some of the cases I have seen online. But I believe it would be worth further investigating if you would be interested.
@Wtvrflotesurgoat
@Wtvrflotesurgoat 18 дней назад
are there signs in your family of this?
@gymnasticlife1788
@gymnasticlife1788 18 дней назад
@@Wtvrflotesurgoat yes
@gymnasticlife1788
@gymnasticlife1788 18 дней назад
@@Wtvrflotesurgoat perhaps not specifically this I'm not a doctor but some of the symptoms led me to this. Shortly after I made this comment they found a suspicion of fibrous dysplasia on my MRI so hopefully we are getting closer to answers 🤞
@Wtvrflotesurgoat
@Wtvrflotesurgoat 17 дней назад
@@gymnasticlife1788 oh no thats rough. theres definetly different levels to every disorder.