raredisease

Pictures about raredisease

Today I had a special guest watching my training....This little man is fighting a rare disease....he motivated like crazy 🙏🏻💪🏻 #training #motivation #raredisease #work #keepfighting #nevergiveup insta topsy.oneRaffael: Pejuang Cilik yang Taklukan Penyakit Langka

Menurut kamu kata apa yang dapat menggambarkan semangat Raffael?
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Ada pejuang cilik lainnya yang butuh dukungan? DM ya!

Terima kasih #OrangBaik
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@clara_hapsari
@lovelydevi22 
@sahabatanak
@osisstece
@anak.id

#raffael #banturaffael #yogyakarta #jogja #stelladulce #penyakitlangka #raredisease insta topsy.oneIf you can’t explain what Dysautonomia is in less than 30 seconds (here’s looking at you, healthy folks 😉), swipe right because it’s time to get E D U C A T E D. 😏 But seriously, swipe left. ⬅️ These great images are from @potsiespoons insta topsy.oneMY FIRST YOUTUBE VIDEO IS UP ON MY NEW CHANNEL!! the link to the video is in my bio ☺️ ICLC MEMBER FEATURE: Everything in my life changed in 2005 when my Dr said, "You have Lupus.” I was sick for a while, developed a bad cough and lost a lot of weight. I got to the point where I couldn’t walk up and down the stairs at my parent’s house or even open a bottle of water. From 2005-2010, I almost lost my battle 3 different times. The last of these battles was when my son was 8 months old. I had spent 2 months in the hospital and at one point the Dr said, "I🦓SHOUT OUT TO ALL OF US FIGHTING A BATTLE THAT MOST PEOPLE DON’T UNDERSTAND🦓
~Keep Hanging In There~ insta topsy.oneNausea life! Does anyone else get restless leg from phenergan or Benadryl? Every once in awhile it happens to me and itHope you enjoy our new song and video! To watch the full-length vid, go to YouTube.com/chloetemtchine Or click on link in bio 🤗 #musicvideos insta topsy.oneCHARGIE OF THE DAY 
HereWeAnother #ViicesOfNMO episode recorded by TSF Chief Community Relations Officer, Gabriela Romanow 🌺 Podcast coming soon! insta topsy.oneNews from @CleveladClinic: This "SmartPill" is the sister of the pill cam but it also measures the acid level, pressure, temperature and time of your GI tract. This painless diagnostic test can help diagnose difficult to identify GI conditions like gastroparesis.⠀
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From the article: "If you have unexplained stomach problems, such as nausea, bloating, constipation, chronic abdominal pain or vomiting, you might swallow a pill — but not the medicated kind.⠀
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Instead, consider a “smart” pill, which gathers data as it moves through your GI tract. This painless tool helps your doctor pinpoint the cause of your problem so you can get the best treatment, says gastroenterologist Michael Cline, DO.⠀
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How can the pill help?⠀
Data gathered by such a pill could help your doctor diagnose a condition called gastroparesis, which causes food to move abnormally slowly from your stomach to the small intestine, while ruling out another GI condition, such as chronic constipation.⠀
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Gastroparesis, which means partial paralysis of the stomach, is a common condition for those with diabetes. The condition reduces your stomach’s ability to empty its contents, but it does not involve a blockage.⠀
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“Basically, gastroparesis is a stomach that doesn’t empty well,” says Dr. Cline.⠀
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And it’s a difficult disease to treat, he says. Treatment typically begins with adjustments to diet and medication. If those approaches don’t work, surgical treatments are the next steps."⠀
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Go to our FaceBook page (link in bio) to read the full article.⠀
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#gusgear⠀⠀⠀⠀⠀
#ostomy #ileostomy #colostomy #centrallines #tpnlife #chronicillness #shortgutsowhat #shortgutsyndrome #shortgut #broviac #hickman #TPN #sbsawareness #raredisease ⠀⠀⠀⠀⠀
#gastroparesis #HPN #PN ⠀⠀⠀⠀⠀
#gastroschisis #hirschsprungsdisease #nec #invisibleillness #specialneedsmom #specialneeds #spoonie #medicalfamily #medicallycomplex #mito #disability insta topsy.one#miracleboy #miraclebaby #mastobaby #mastocytosis #rarediseaseawareness #raredisease #mastcelldisease #specialboy #jayceeli #faithforjayce #JET #park #sunny #beautifulday #happybaby #texaspestsolutions #texas #bridge insta topsy.oneChurch at home today as I am laying with my tens unit... love I can watch live!! #countdown#thepeoplechurch #church#online#live#liveauthentic #truth#Godsword#keepfightingthegoodfight🙏 #syringomyelia #syringomyeliaawareness #warrior #incurable #raredisease #rare#chronicpain #chronic illness #mystory #myalienhurts😓👽 #rest#sundaymorning insta topsy.oneVoices of #NMO podcast recording with TSF Chief Development Officer @bqboston! 🌺 insta topsy.oneSunday mood! You can find me here in my favorite place... Resting, relaxing and restoring. #raredisease #rarediseases #chronicillness #chronicillnesses #rarediseaseawareness #chronicillnessawareness #spoonielife #sickgirlsclub #sundaymood #mybedismyfavoriteplace #restrelaxrestore #selfcare #selfcaresunday #selfcareisimportant insta topsy.one🙍🏻🙍🏻‍♂️ insta topsy.oneThe last roses before winter!  Remembering Addison Crompton today.  It’s the 8th anniversary of her passing!  Sending love to heaven today!  #campomelicdysplasia #raredisease #bereavedmother insta topsy.one5 days of Gratitude! Day one: This Thanksgiving, our hearts are full. Your generosity helps us make a positive difference for families like the Strouse’s. They shared words of thanks here. 
#cc4ckids #RareDisease #cc4c insta topsy.oneSunday with babe and her sister! 🖤
📷Photo by: @krismynt
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#nonbinarygender #nonbinary #genderqueer #gendernonconforming #baldhair #genderneutral  #androgyny #androgynous #gay #gays #gaycute  #gaysnap #lgbtq  #wheelchairlife #queer  #models #tomboy  #tomboylook #wheelchairwarrior #spoonie #spoonielife #chronicdisease #chronicillness #wheelchairmodel #modelling  #raredisease #disability #alternative #alternativemodel #dapperstyle insta topsy.oneAfter a really heavy week for my mind and for my body finally a sweet sunday, im still not ok but im trying to do my best , thursday, i found that now is totally impossible nove from bed to chair alone with my parente, now i totally need an elevator, and is sad until now before i was a le to do it once at month.But today i dont want to think to nf, today i just want breathe and do what i love, with a wonderfull strawberries pastry and a smile wish you all a beautiful sunday
#sunday #sweet #pastry #strawberries #smile #nf #nf1 #neurofibromatosi #neurofibromatosis
#neurofibromatosistype1 #neurofibromatosisfighter #raredisease #spoonie #spooniefighter #spooniegirl #fuckofzembraimunicorn #mylifewithnf #disability #livinginbed #howspendtimewhenyourestukinbed #tumors #tiredoffthisshit #tiredofallpain #tiredtofight insta topsy.oneRepost from @mike.nitz - sporting his #berarebeyou tattoo on a beach from Hawaii - get your tattoos on and start sharing!!! #campaign #fabry #raredisease #empower insta topsy.oneFresh hair cut! ✂️
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#nonbinarygender #nonbinary #genderqueer #gendernonconforming #baldhair #genderneutral #genderfluid #androgyny #androgynous #gay #gays #gaycute  #gaysnap #lgbtq #hlbtq #wheelchairlife #queer #queers #models #wheelchairwarrior #spoonie #spoonielife #chronicdisease #chronicillness #raredisease #disability #alternative #alternativestyle #gaystagram #sundayvibes insta topsy.oneDonFor anyone that believes in God, a prayer for healing & answers for my mum would be appreciated. For anyone that knows my mum, you know she doesnNot your Yule log. #burnone #outside #getaway #unplug #redlighttherapy #hippieshit #biohacking #grounding #gaia #cityandcolour #cabininthewoods #scenery #wanderlust #livin #pixielife #keepingitreal #CIPO #wellness #spoonielife #IBD #IC #gastroparesis #postcardsfromtheworld #raredisease #healing #strugglewell #moveitorloseit #starseed #slowmotionvideo #momentofzen insta topsy.one

Best tweets:

HSAN1E Society 19/11/2017 05:47
HSAN1E affects adults in their 30's. HSAN1E is FATAL. It's a devastating #raredisease that needs more awareness. Learn more about it as hasn1esociety.org   #hearingloss #neuropathy #Dementia
Linda Mann has a minuscule brain tumor no one can find. For years, it has been secreting harmful hormones into her body, gradually disrupting her health and her life. This year, she finally found the right experts to find the tumor, to cut it out and cure ...
Yoni Maisel- CVID 19/11/2017 02:58
Why #RareDisease Scientists Are Superheros in Lab-Coats! http://www. omaha.com/livewellnebras ka/cu-doctor-s-work-on-hereditary-cancer-took-him-halfway/article_339b525c-49a2-5f0b-9908-28d40e97eb19.html   … #SNRTG #genomics #BigData #DataScience #cancer #RareCancer #OpenScience #science #genetics
http://pic.twitter.com/rcCjdMZt5g
Why #RareDisease Scientists Are Superheros in Lab-Coats!  http://www. omaha.com/livewellnebras ka/cu-doctor-s-work-on-hereditary-cancer-took-him-halfway/article_339b525c-49a2-5f0b-9908-28d40e97eb19.html   …  #SNRTG #genomics #BigData #DataScience #cancer #RareCancer #OpenScience #science #genetics<br>http://pic.twitter.com/rcCjdMZt5g

A man who had worked his whole career as a stone mason has died after a severe case of the rare chronic disease scleroderma effectively turned his body to stone. Scleroderma, an auto-immune disease, causes the body to produce too much of the structural ...
Yoni Maisel- CVID 19/11/2017 12:43
A "Bowie-Esque" Approach to Medical #Innovation; One Interesting Read! online.liebertpub.com/doi/pdf/10.108 9/omi.2017.0148   … #SNRTG #OpenScience #RareDisease #genomics #science #DataScience #DavidBowie #ITRTG #BigData #biotech #GlobalHealth #innovation
http://pic.twitter.com/06z6sYRlsx
A "Bowie-Esque" Approach to Medical #Innovation; One Interesting Read!  http:// online.liebertpub.com/doi/pdf/10.108 9/omi.2017.0148   …  #SNRTG #OpenScience #RareDisease #genomics #science #DataScience #DavidBowie #ITRTG #BigData #biotech #GlobalHealth #innovation<br>http://pic.twitter.com/06z6sYRlsx
If there’s anyone who can weigh in on “Wonder,” the Julia Roberts and Owen Wilson film out Friday, it’s 12-year-old Hannah. The spunky Long Islander was born with the same facial disfigurement as 10-year-old Auggie of the film, adapted from R.J ...
Yoni Maisel- CVID 18/11/2017 08:30
What Data Scientists Could Learn from #Zebrafish AND #RareDisease Research! http://www. computerweekly.com/microscope/opi nion/Data-scientists-could-learn-a-lot-from-Zebrafish   … #data #DataScience #OpenScience #Biology #IoT #ITRTG #Biology #tech #technology #genomics #science #BigData @ComputerWeekly
http://pic.twitter.com/toMv9lS3Ym
What Data Scientists Could Learn from #Zebrafish AND #RareDisease Research!   http://www. computerweekly.com/microscope/opi nion/Data-scientists-could-learn-a-lot-from-Zebrafish   …  #data #DataScience #OpenScience #Biology #IoT #ITRTG #Biology #tech #technology #genomics #science #BigData @ComputerWeekly <br>http://pic.twitter.com/toMv9lS3Ym
LONDON – Doctors treating a critically ill boy with a devastating skin disease used experimental gene therapy to create an entirely new skin for most of his body in a desperate attempt to save his life. Two years later, the doctors report the boy is ...
Yoni Maisel- CVID 18/11/2017 03:38
Power, Scope of #RareDisease Research Exemplified In Search for New Pain Drugs https://www. cnbc.com/2017/11/17/rar e-genes-yield-new-hope-for-managing-pain-without-opioids.html   … #SNRTG #genomics #OpenScience #science #BigData #brain #tech #opioidcrisis #ChronicPain #ITRTG
http://pic.twitter.com/tluhjA10lD
Power, Scope of #RareDisease Research Exemplified In Search for New Pain Drugs  https://www. cnbc.com/2017/11/17/rar e-genes-yield-new-hope-for-managing-pain-without-opioids.html   …  #SNRTG #genomics #OpenScience #science #BigData #brain #tech #opioidcrisis #ChronicPain #ITRTG<br>http://pic.twitter.com/tluhjA10lD
Anyone would understand if Joe and Nancy Coyne wanted to stay home. Their son Garrett's first 31/2 years were exactly what they hoped they'd be. Garrett would sing and dance in an instant, and he was always laughing, his parents said. When he was younger ...
American MedChem 18/11/2017 02:48
#ThanksGiving for great world #Teachers #quote "The day the power of love overrules the love of power, the world will know peace." - M. Gandhi #children #medicine #health #Meds4Kids #RareDisease #ChildhoodCancer #NTDs #science #research #wellness
http://pic.twitter.com/5kpqkEq3SC
#ThanksGiving for great world #Teachers #quote "The day the power of love overrules the love of power, the world will know peace." - M. Gandhi #children #medicine #health #Meds4Kids #RareDisease #ChildhoodCancer #NTDs #science #research #wellness<br>http://pic.twitter.com/5kpqkEq3SC
Aliza Licht 17/11/2017 11:13
Please lend your voice in RTing this. As the mother of a #raredisease patient who does not have a treatment, repealing the #OrphanDrug Tax Credit takes away my hope of a treatment. Please #SaveOrphanDrugs! Our government wants to take this hope away. @SenSchumer @SenGillibrand
Findacure 17/11/2017 03:41
#Newcastle is known for many things, such as the Geordie accent and brown ale - but few know that the city is also a hub for excellent #RareDisease research! We held our latest Showcase there in October to highlight this. Check out our review of the day: ow.ly/pJRx30gEaoj  
http://pic.twitter.com/2YuAG99GtM
#Newcastle is known for many things, such as the Geordie accent and brown ale - but few know that the city is also a hub for excellent #RareDisease research! We held our latest Showcase there in October to highlight this. Check out our review of the day:  http:// ow.ly/pJRx30gEaoj     <br>http://pic.twitter.com/2YuAG99GtM
Yoni Maisel- CVID 17/11/2017 01:30
An Incredible Fish Brings Another Potential Medical Breakthrough crchum.chumontreal.qc.ca/en/news-briefs /discovery-promising-medication-amyotrophic-lateral-sclerosis-als   … … #ALS #MND #ITRTG #OpenScience #DataScience #biotech #RareDisease #BigData #genomics #tech #zebrafish
http://pic.twitter.com/ffB70EUu7H
An Incredible Fish Brings Another Potential Medical Breakthrough  http:// crchum.chumontreal.qc.ca/en/news-briefs /discovery-promising-medication-amyotrophic-lateral-sclerosis-als   …  … #ALS #MND #ITRTG #OpenScience #DataScience #biotech #RareDisease #BigData #genomics #tech #zebrafish<br>http://pic.twitter.com/ffB70EUu7H
Stephanie Bozarth 16/11/2017 11:34
The #OrphanDrug Tax Credit gives me hope for a future treatment for my #raredisease. Please don’t take away my daughters hope. Please #SaveOrphanDrugs
http://pic.twitter.com/r8OdzasmgR
The #OrphanDrug Tax Credit gives me hope for a future treatment for my #raredisease. Please don’t take away my daughters hope. Please #SaveOrphanDrugs<br>http://pic.twitter.com/r8OdzasmgR
Rico Verhoeven 16/11/2017 07:25
Today I had a special guest watching my training....This little man is fighting a rare disease....he motivated like crazy #training #motivation #raredisease #work #keepfighting #nevergiveup
http://pic.twitter.com/MGFmNneqPB
Today I had a special guest watching my training....This little man is fighting a rare disease....he motivated like crazy #training #motivation #raredisease #work #keepfighting #nevergiveup<br>http://pic.twitter.com/MGFmNneqPB
Yoni Maisel- CVID 16/11/2017 03:44
Medicine Will Continue to Be Transformed By Never-Before-Seen Views of the Human Body https:// spectrumnews.org/news/technolog y-harry-potter-movies-brings-brain-focus/   … #ITRTG #IT #tech #IoT #technology #science #brain #VR #HarryPotter #innovation #VirtualReality #RareDisease
http://pic.twitter.com/UDyVD53dQx
Medicine Will Continue to Be Transformed By Never-Before-Seen Views of the Human Body  https:// spectrumnews.org/news/technolog y-harry-potter-movies-brings-brain-focus/   …  #ITRTG #IT #tech #IoT #technology #science #brain #VR #HarryPotter #innovation #VirtualReality #RareDisease <br>http://pic.twitter.com/UDyVD53dQx
Yoni Maisel- CVID 16/11/2017 12:49
Turns Out Yesterday Was a Big News Day for TWO Related Syndromes: 1) Gene-Editing for "Hunter"; 2) #StemCell Hope for "Hurler" https:// news.usc.edu/131143/stem-ce lls-may-offer-hope-for-children-with-hurler-syndrome/   … #ITRTG #genomics #OpenScience #biotech #science #BigData #RareDisease #tech #DataScience #SNRTG #technology
http://pic.twitter.com/QiAcgGbtml
Turns Out Yesterday Was a Big News Day for TWO Related Syndromes:   1) Gene-Editing for "Hunter";  2) #StemCell Hope for "Hurler"  https:// news.usc.edu/131143/stem-ce lls-may-offer-hope-for-children-with-hurler-syndrome/   …   #ITRTG #genomics #OpenScience #biotech #science #BigData #RareDisease #tech #DataScience #SNRTG #technology<br>http://pic.twitter.com/QiAcgGbtml
Yoni Maisel- CVID 15/11/2017 10:42
Not All Rare Genetic Mutations Are Detrimental - Some May Be Quite Beneficial https://www. aaas.org/news/study-ami sh-suggests-mutation-linked-longer-life-span   … #SNRTG #genomics #education #OpenScience #DataScience #tech #RareDisease #science #BigData #genetics
http://pic.twitter.com/gJS9FSErNj
Not All Rare Genetic Mutations Are Detrimental - Some May Be Quite Beneficial  https://www. aaas.org/news/study-ami sh-suggests-mutation-linked-longer-life-span   …  #SNRTG #genomics #education #OpenScience #DataScience #tech #RareDisease #science #BigData #genetics<br>http://pic.twitter.com/gJS9FSErNj
Carrie Ostrea 15/11/2017 03:57
Looking forward to today's #RareDisease Congressional Caucus to discuss genetic testing and sequencing with @ngly1org . @EveryLifeOrg
http://pic.twitter.com/kGqgnO4BGZ – a Rayburn House Office Building
Looking forward to today's #RareDisease  Congressional Caucus to discuss genetic testing and sequencing with @ngly1org . @EveryLifeOrg<br>http://pic.twitter.com/kGqgnO4BGZ – à Rayburn House Office Building
Yoni Maisel- CVID 15/11/2017 12:18
Innovation: A Pioneering Attempt to Cure a #RareDisease: The Future, Today http://www. chicagotribune.com/news/nationwor ld/science/ct-us-scientists-gene-editing-20171114-story.html#innovation   … #OpenScience #DataScience #tech #genomics #science #technology #SNRTG #ITRTG
http://pic.twitter.com/IVpqwLLHKR
Innovation: A Pioneering Attempt to Cure a #RareDisease: The Future, Today  http://www. chicagotribune.com/news/nationwor ld/science/ct-us-scientists-gene-editing-20171114-story.html#innovation   …  #OpenScience #DataScience #tech #genomics #science #technology #SNRTG #ITRTG<br>http://pic.twitter.com/IVpqwLLHKR
Yoni Maisel- CVID 14/11/2017 09:12
The Vast Potential for Diagnosing Unusual Medical Cases on #SocialMedia | https://www. npr.org/sections/goats andsoda/2017/11/13/557548378/is-it-a-good-idea-to-share-patient-info-on-social-media   … #ITRTG #IoT #DataScience #OpenScience #RareDisease #tech #SocialMedia #science #BigData #cancer
http://pic.twitter.com/NtHCEgxqaT
The Vast Potential for Diagnosing Unusual Medical Cases on #SocialMedia |  https://www. npr.org/sections/goats andsoda/2017/11/13/557548378/is-it-a-good-idea-to-share-patient-info-on-social-media   …  #ITRTG #IoT #DataScience #OpenScience #RareDisease #tech #SocialMedia #science #BigData #cancer<br>http://pic.twitter.com/NtHCEgxqaT
Cam Rare Disease 14/11/2017 02:57
#RareDisease is common, #Rare is everywhere 1 in 17 people, or 7% of the population, will be affected by a rare disease at some point in their lives. This = @ 3.5 million people in the UK, 30 million across Europe & 300 million worldwide #TuesdayThoughts Stats via @rarediseaseuk
http://pic.twitter.com/SJp71vmJlm
topsy
Yoni Maisel- CVID 13/11/2017 10:01
3 Million DNA, Tissue, Blood & Tumor Samples - Check Out This MASSIVE Biobank http://www. smh.com.au/national/healt h/biggest-biobank-in-the-southern-hemisphere-to-revolutionise-medical-research-in-nsw-20171113-gzk5os.html   … #brain #genomics #ITRTG #BigData #OpenScience #DataScience #RareDisease
http://pic.twitter.com/fONxE4gjcG
3 Million DNA, Tissue, Blood & Tumor Samples - Check Out This MASSIVE Biobank  http://www. smh.com.au/national/healt h/biggest-biobank-in-the-southern-hemisphere-to-revolutionise-medical-research-in-nsw-20171113-gzk5os.html   …  #brain #genomics #ITRTG #BigData #OpenScience #DataScience #RareDisease <br>http://pic.twitter.com/fONxE4gjcG
Yoni Maisel- CVID 13/11/2017 01:28
Next-Gen #Cancer Therapies; A Tribute to a Pioneer. https://www. thedailybeast.com/todays-aggress ive-anti-cancer-therapies-wouldnt-exist-without-jesse-gelsinger   … #SNRTG #BigData #RareDisease #ChildhoodCancer #brain #tech #science #OpenScience #inspiration
http://pic.twitter.com/jcZXvugmgz
Next-Gen #Cancer Therapies; A Tribute to a Pioneer.  https://www. thedailybeast.com/todays-aggress ive-anti-cancer-therapies-wouldnt-exist-without-jesse-gelsinger   …  #SNRTG #BigData #RareDisease #ChildhoodCancer #brain #tech #science #OpenScience #inspiration<br>http://pic.twitter.com/jcZXvugmgz
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