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#rarediseaseday

Posts tagged as #rarediseaseday on Instagram

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#aktionschrittmacher am #rarediseaseday: Gespräch und grüne Schleichwege durch Hamburg. Wir wandern stellvertretend für 4 Millionen #seltene in Deutschland. #aktionschrittmacher #rheuma #showyourrare  #seltene #vaskulitis #selteneerkrankungen #weitwandern #fernwanderwege1 #wandern
Afghanite, from Afghanistan badakhshan  #afghanite #blueafghanite #rarediseaseday #mineralmakeup #spacemen#contactwhatsup00923351195111
#rarediseaseday
Hello if you are interest in this puppy it's was for selling,  for selling only serious buying should Chat me,  for every @catbabydog  collar you buy. We donate food to a dog in need. {{buy a collar. Feed a dog}} ❤️ ❤️ ❤️ ❤️ ❤️ ❤️ ❤️ ❤️ ❤️ ❤️ ❤️ ❤️ #pawsitivepets #dogsofinsta #doglover #trylife  #trucker #the Italian kitchen' #outlaw #carlifestyle #carsforsale #house_plant_community #cutedogs #spanishwaterdog #spanishwaterdogpuppy #weeklyspread #spanishwaterdoggo #bestwoof #dogslife #doglove #instagramdog #instadog #rarediseaseday #doglover #catstagram #weeklyspread #doggy #national #dog_nation #quba #halva #ilovemydog #puppylife #happypuppy
World Rare Disease Day 2019.  Dubai, Kite Beach.  For the second year, together with my dear fellow mums @jamie__hutson , Hind and @lynnbjafar and backed up by our trusted High Hopes and super aunty @aidabarghout, we had the amazing opportunity to celebrate our children and to tell our Dubai community about Rare Diseases and why inclusion, tolerance and kindness are important, not only to them, our determined and incredible children, but to the whole society as well.  It was again an unforgettable day. Thank you Dubai.  Thank you to the many people and organizations who support our cause  @highhopesdubai @rarediseasedaydubai @worldgamesad @uaegda @dr_mariammatar @jalilachildrens @dubaipolicehq @skidxb @aspercasper @jadsinclusion @rashidcentre @findsalt @kitebeachdubai @eurordis @dubaijuggler @exalto.emirates  #mydubai #yearoftolerance #rarediseaseday #showyourrare
Erinn just started her account @cureforeirinn where she documents her journey to raise awareness and ultimately find a cure for her #doparesponsivedystonia ⠀ .⠀ Why don’t we show this strong and brave young woman some love and support by hopping over to her page for a like and a follow?! ⠀ .⠀ #showyourrare #repost #cureforerin #stillsearching #bh4deficiency #hashimotodisease #autoimmunedisease #erinn #sistersupport #rarediseaseday
What is the nebula? 🌌☁️ Mass of cosmic celestial matter, diffuse and luminous, that looks like a cloud.☁️😲 ////////////////////////////////////////////////// Que es la nebulosa? 🌌☁️ Masa de materia cósmica celeste, difusa y luminosa, que tiene aspecto de nube.☁️😲 - - - - #universe #space #galaxy #star #planet #universo #espacio #galaxia #estrellas #planeta #barcelona #realmadrid #psg #juventus #messi #cristianoronaldo #neymar #oddity #rarediseaseday
Oddity of the moon🌕🌑: More people have come to the Moon than to the depths of the oceans.🌊🌕 ///////////////////////////////////////////// Rareza de la luna🌕🌑: Más personas han llegado a la Luna que a las profundidades de los océanos.🌊🌕 - - - - #universe #space #galaxy #star #planet #universo #espacio #galaxia #estrellas #planeta #barcelona #realmadrid #psg #juventus #messi #cristianoronaldo #neymar #oddity #rarediseaseday
😀😀😀 . . Javaria Malik (Spinal Muscular Atrophy Type 3 Warrior) 💪🏻💪🏻💪🏻 👉 👉 Don't forget to follow me on Instagram @sma_type3_warrior  Read more about 'Javaria Malik' here: https://bit.ly/2S8gqX8  #spinalmuscularatrophy #spinalmuscularatrophytype3 #javariamalik #influencer #womenwarriors #warriors #rehabilitation #awareness #lifecoach #tedx #tedtalk #invisibleillness #chronicillnesswarrior #challenges #motivation #excercise #humour #humorista #chronicpainawareness #rarediseaseday #chronicmemes #funnymemes
CHAPTER 091: sporty spice  Heute morgen habe ich nach 3 Monaten mal wieder Körpermaße genommen. Wer die einzelnen Unterschiede sehen will, kann nach rechts swipen💩. Der größte Erfolg ist 4 cm. Unterschied an Bauch und Taille, klingt für manche vielleicht wenig, ich versuche eher das Gesamtergebnis zu betrachten (schätze, das 10 kg runter sind📉). Aktuell habe ich also denselben „Körperbau“ wie im August letzten Jahres, wo ich noch stetig zugenommen habe. Mein Ziel ist es, bis zu den Sommerferien im August unter 70 kg zu fallen🌱. Der Sport ist nur aktuell wegen dem Reduzierten Kortison und den daraus resultierenden Schmerzen💥 ein wenig in Vergessenheit geraten, das soll sich diese Woche ändern💪🏼. Außerdem fängt morgen endlich mein Master🎓 an, auf den ich mich schon seit Monaten freue. Die einzigen schwarzen Wolken ⛈ am Horizont sind meine Sorgen, wie ich in Phasen mit Fatigue, Schub oder Konzentrationsschwierigkeiten lernen soll😖, das wird sich dann wohl zeigen.  #rheumalicious#rheuma#rheumatoid#rheumaliga#rheumatology#relapsingpolychondritis#polly#autoimmune#disease#autoimmunedisease#autoimmun#krankheit#autoimmunkrankheit#chronicillness#chronischkrank#seltenekrankheiten#raredisease#spoonie#gesund#gesundheit#cushingsyndrom#potd#inspiration#girly#weheartit#showyourrare#setzeinzeichenfürdieseltenen#rarediseaseday
Bizler nadir hastalığa sahip çocukların aileleriyiz.Nadir hastalıklar 2000 de bir kişide görülen % 95 inin tedavisi olmayan hastalık çeşitleridir.Dünyada  7-8 bin nadir hastalık çeşidi var ve yaklaşıl 350 milyon kişi bu hastalıklarla mücadele ediyor.Mücadele eden insanların yarısını çocuklar oluşturuyor.Sizlerden bizlere destek olmanızı ve mecliste nadir hastalıklar tanı ve tedavi komisyonu kurulmasını istiyoruz.Farkım nadir olmak, sen de elini uzat yakana bir mavi kurdela tak.  #şimdisırabizde #birgündeğilhergünfarkedilmekiçin #yakanabirmavikurdeletak #paylaşsesimizeseskat #nadirhastalıklargünü #rarediseaseday . . . ozgefehan mawi.1 criduchat.tansonra semraaltindis elif_basibutun tcs_annesi.irmak i_cell zeynepyaparergun almoriste cigdemozavcii
The Rare White Tiger  Wild life series (5/20)  The white tiger or bleached tiger is a pigmentation variant of the Bengal tiger, which is reported in the wild from time to time in the Indian states of Madhya Pradesh, Assam, West Bengal and Bihar in the Sunderbans region and especially in the former State of Rewa.[1] Such a tiger has the black stripes typical of the Bengal tiger, but carries a white or near-white coat.  #wildplanet #igscwildlife #animalelite #earthcapture #netgeotrevellinindia #ngtindia #bbcearth #bbc #netgeoyourshot #netgeo #netgeoindia #discoveryindia #discoverindia #tiger #whitetiger #rarediseaseday #wildlifeofindia #wildlife_perfection #wildlifephotography #bbc #discoveryindia #netgeoindia #camerewalebhaiya #mantuphotography #mymobileview #yourshot_india #tremendous__india #fhoto_factory #shutterbugsindia #snapseed #snapseededit  @canonindia_official @netgeo_official_ @natgeoindia @discovery @discoverychannelin  @natgeowild
#rarediseaseday was truly an international celebration! Patients from all over the world shared their #raredisease stories. Check them out! @RareDiseaseDay #undiagnosed #advocacy #showyourrare⠀ rarediseaseday.org
📢 Calling EVERYONE & ANYONE with big ♥!⁣ ⁣ 💪 Let’s #smashsmard & SAVE LIVES together! DONATE TODAY:⁣ www.smashSMARD.org/donate or #smashsmard - Facebook Fundraiser!⁣ ⁣ 🔬Gene Therapy IS the solution, but it’s VERY expensive. $3 million expensive! EVERY PENNY COUNTS & Will fund SMARD1 #genetherapy research at Nationwide Children’s Hopsital ⁣ ⁣ 📚 To learn more, please like Smash SMARD or visit www.smashSMARD.org ⁣ ⁣ ⭐ Please participate, donate, and NOMINATE AS MANY PEOPLE AS POSSIBLE!! Copy and paste the body in the comments of your post! ⭐
Javaria Malik (Spinal Muscular Atrophy Type 3 Warrior) 🤛🏻🤛🏻🤛🏻 . . There’s an experience so many people who live with chronic, invisible conditions have in common: that moment when someone looks at you and, upon hearing you have an illness, exclaims, “But you don’t look sick!” 🤨🤨🤨 . . Hair, makeup, clothing choice and attitude all aid me and help to make me a good ; it doesn’t mean I’m not sick. The pain underneath the surface is only ever a few bad moments away from breaking through.” . . Even on a ‘good’ day where I manage to get stuff done, I’m still in pain — it’s just less pain than when I’m stuck in bed. I literally am in pain 24/7, the only variable is the severity.” . . “I have pain 24/7. There is no minute where I am not in discomfort. Some days are worse, some are bearable. But I am never pain-free. You don’t see it because I’m strong. I avoid company on my bad days, so you have no idea what pain looks like when it’s written on my face and I’m ready to give up.” . . Important to raise awareness of spinal muscular atrophy, better understanding of the disease! 👍🏻👍🏻👍🏻 👉 👉 Don't forget to follow me on Instagram @sma_type3_warrior  Read more about 'Javaria Malik' here: https://bit.ly/2S8gqX8  #spinalmuscularatrophy #spinalmuscularatrophytype3 #javariamalik #influencer #warriors #motivation #pain #beauty #hairday #awareness #lifecoach #tedx #tedtalk #invisibleillness  #motivation  #makeup #glam #glamour #socialmediaexpert #instafashion #fitfam #rarediseaseday #youdontlooksick #beautybloggers #swag #strongsoul #attitude #strongwomen #dubailife #dubaifashion #model
Encantador! Não pode ver um instrumento ocioso e já quer fazer som! Esses são os nossos williams dos trópicos. Lovely! he can not see an idle musical instrument and wants to make music! These are our williams of the tropics (Brazil) #sindromedewilliams #williamssyndrome #sindromedewilliamsbrasil #rarediseaseday #sindromedewilliams #williamssyndrome #sindromedewilliamsbrasil #rarediseaseday #williamstropical
NAIT Awareness Week ♡ This week I am raising awareness for Neonatal Alloimmune Thrombocytopaenia (NAIT), a rare platelet condition which is not routinely screened for in pregnancy but can have long-lasting and even fatal consequences for baby in-utero & at birth. In order to be diagnosed with this condition, you unfortunately must first experience the devastating effects. In our case, it was our son James. When James was conceived, he inherited platelet antigens from my husband which were recognised by my body as foreign, and I made reactive antibodies which crossed the placenta and subsequently ‘attacked’ James’ platelets. James was subsequently born with a severely low platelet level, and he immediately received a transfusion but his levels didn’t rise as expected. This is when the doctors started testing for NAIT and discovered that James required HPA specific platelets. Finding these rare platelets was a bigger task than expected - platelets have a short shelf life of 3 days and there were only a small number of matched donors in the country. Thankfully, a donor bag was sent over on ice from Melbourne immediately. They divided this one donor bag into three and gave James a transfusion as soon as they arrived. Over the next 24 hours he received all three transfusions which were enough to raise his platelets to a ‘normal’ level. James continued to thrive from this day forward, and despite having a small grade 1 IVH (brain bleed), thankfully he has had no long-lasting complications from this condition. We will forever be in debt to the doctors for their quick diagnosis and the kind-hearted selfless people who donate blood to save a life – this time it was our little man’s life. Most doctors and midwives aren't even familiar with this condition, and yes maybe one day there will be screening during pregnancy, but my aim today is to simply to share our story so YOU are aware. And if ever you find yourself in our position, I only hope your outcome
Pues ajá , otro sitio que conocí el día de hoy , otro día haciendo lo que me encanta y ajá , una fotico ksual no afecta el ciclo :v ph : @brandy_well . . #street #art #streetartphoto #color #rarediseaseday #fresh #edits #happy #cool
What is a star? ⭐ Stars are motors of cosmic energy that produce heat, light, ultraviolet rays, X-rays and other forms of radiation. /////////////////////////////////////////// ¿Qué es una estrella? ⭐ Las estrellas son motores de energía cósmica que producen calor, luz, rayos ultravioleta, rayos X y otras formas de radiación. - - - - #universe #space e #galaxia #star #planet #universo #espacio #galaxia #estrellas #planeta #barcelona #realmadrid #psg #juventus #messi #cristianoronaldo #neymar #oddity #rarediseaseday
Galactic heart❤️🌌 /////////////////////////////// Corazón galáctico❤️🌌 - - - - #universe #space #galaxia #star #planet #universo #espacio #galaxia #estrellas #planeta #barcelona #realmadrid #psg #juventus #messi #cristianoronaldo #neymar #oddity #rarediseaseday
Sometimes you just kind a third kidney at umbilicus....sometimes.  #pelvickidney #rarediseaseday #vascular #vascularultrasound #ultrasound #iliacveincompression
Space Cableway🌑😍 ///////////////////////////////// Teleférico espacial🌑😍 - - - - #universe #space #galaxy #star #planet #universo #espacio #galaxia #estrellas #planeta #barcelona #realmadrid #psg #juventus #messi #cristianoronaldo #neymar #oddity #rarediseaseday
Real is rare👻💕🌸❤🕊💗💠💋📹 . #realestate #is #rarediseaseday #yo #full #stop
The first What is the universe?🌌 The universe is the totality of space and time, of all forms of matter and energy //////////////////////////////////////////////// Lo primero ¿Qué es el universo?🌌 El universo es la totalidad del  espacio y del tiempo, de todas las formas de la materia y energía - - - - #universe #space #galaxy #star #planet #universo #espacio #galaxia #estrellas #planeta #barcelona #realmadrid #psg #juventus #messi #cristianoronaldo #neymar #oddity #rarediseaseday
अंधेरे में शायद शब्द भी खो जाते हैं.... इसीलिए ख़ामोशी दूर तक फैली रहती है!! #rareviwe #rarediseaseday # #silent #tflers #pretty #beautiful #red #orange #pink #sky #skyporn #cloudporn #nature #clouds #horizon #photooftheday #instagood #gorgeous #warm #view #night #morning #silhouette #instasky #all_sunsets_landscape #skye_taten #ngtindia #hindiwriting #whpofficial
😉Follow for more:- @gurughantaal1234 . ☑️ For full video:- YouTube/Barcroft TV
जो मरीज कई डॉक्टर को दिखा चुके हो या पुरानी बीमारी हो या पैसा बहुत लगता हो इलाज में या बहुत परेशान हो तो एक बार अवश्य मिले  डॉक्टर साहब के मिलते जुलते नामों से सावधान रहें, पता  ढाका: ढाका कॉमप्लेस, टेम्पो स्टैंड (चाहत वस्त्रालय) निकट अप्सरा बैरगनिया रोड ढाका pin 845418 समय 9:00 बजे से 4:00 बजे  सोरपनिया: pin 845427  OPD:8 बजे सुबह से 8बजे शाम तक और 24 घंटे इमरजेंसी सेवा उपलब्ध,  WhatsApp नंबर 9006784460 Facebook :https://www.facebook.com/Abdullah-Nursing-Home-1753169114977085/  Dhaka map :https://goo.gl/maps/g6SaAuzTEoR2 Sorpaniya map:https://goo.gl/maps/3kNuE9ifzyQ2 Home map:https://maps.google.com/?q=26.653273,85.221904&hl=en&gl=us https://abdullahnursinghom.wixsite.com/website  बहुत जल्द बहुत सस्ता तमाम प्रकार के ऑपरेशन और डिलीवरी कराने की आधुनिक सेवा उपलब्ध होगी  #bihar #motihari #pixlr #picture #potrait #nursinghome #lifestyle #health #disease #acnetreatment #womenhealth #hairtreatment #kidneydisease #skintreatment #doctor #treatment #relive #rarediseaseday #diseases #heartdisease #diagnosis #raredisease #chronicdisease #india #hindi  #heartdisease #awsome #change #physician #pediatrics
Important to raise awareness of spinal muscular atrophy, better understanding of the disease! 👍🏻👍🏻👍🏻 Javaria Malik (Spinal Muscular Atrophy Type 3 Warrior) 💪🏻💪🏻💪🏻 👉 👉 Don't forget to follow me on Instagram @sma_type3_warrior  Read more about 'Javaria Malik' here: https://bit.ly/2S8gqX8  #spinalmuscularatrophy #spinalmuscularatrophytype3 #javariamalik #influencer #womenwarriors #warriors #gymmotivation #rehabilitation #awareness #lifecoach #tedx #tedtalk #invisibleillness #chronicillnesswarrior #dontjudgemechallenge #challenges #motivation #excercise #coreworkout #fitfam #physicalactivity #rarediseaseday #iphonographer #followtosupport #followtofollowback #dontmakeexcuses #findsolutions #mydubai
Men’s new Christian louboutin trainers  Contact before purchase  In all sizes price may change due to size  Comes with original box contact before purchase to find out if your size is in stock  100% AUTHENTIC PRODUCTS #marketing #hype #buy #sell #sale #stock #new #trending #explorepage #explore #look #newlook #fire #drip #litt #rarediseaseday
#videorandom #ayuwoki #rarediseaseday
Young #robertpattinson styled by me  #twilight #rarediseaseday
A re-imagined version of parachute by Chris Stapleton. I call it electric taco stand. #tacos #chrisstapleton #fenderstratocaster #youwillneedaroofwhenitsraining #thanksforshowinglove #rarediseaseday
“Is there anybody out there just like me? Anybody needing fear to leave? If you don't know how to say it Sing along with me Sing fear, you don't own me There ain't no room in this story And I ain't got time for you Telling me what I'm not Like you know me well guess what? I know who I am I know I'm strong, brave And I am free Got my own identity So fear, you will never be welcome here Whoa, goodbye, goodbye fear Whoa, you will never be welcome her” -Francesca Battistelli . . . #fritzandfriends #strengthismorethanmuscle #strong #mesaphotographer #strengthis #strong #nonprofit #geneticdisorder #raredisease #specialneeds #specialneedsmom #specialneedsparenting #specialneedsparents #strongmom #strongboy #strongboys #mesa #mesaaz #mesaarizona #downtownmesa #aznonprofit #rarediseaseday #raredisease #duchenne #adaptandovercome #adaptation #musculardystrophy #dmd #duchenne#duchennemusculardystrophy #cureduchenne #endduchenne
HAPPY AUTOIMMUNE DISEASE AWARENESS MONTH!!! 🎗️ I am diagnosed with PANDAS Syndrome. (Pediatric autoimmune neuropsychiatric disorder associated with strep) these are just fancy words saying that my immune system attacks my brain. The cause: Sometime in my life I had strep. My immune system fought off the infection. When the infection was terminated, my immune system didn't stop fighting. It had nothing else to fight so it goes up to the brain and starts fighting there. My treatment: I was given an infusion of Rituxan. Rituxan is a medicine given to people with cancer or RA . What it does is it kills the b-cells of the immune system. (The b-cells are the ones attacking my brain) This isn't the first autoimmune condition I'm diagnosed with. I had HSP in the 4th grade. (henoch-Schönlein purpura) The exact cause of HSP is not known, but it it believed to target the blood vessels. Anyways, I hope you learned a thing or two about my autoimmune conditions. If you want more information, please dm me! I would love to explain into further detail 😉 • • • • • #autoimmunedisease #autoimmuneawareness #autoimmunewarrior #pandassyndrome #pandaspans #pandaspansawareness #henochschonleinpurpura #hsp #rituxan #chronicillness #chronicillnessawareness #butyoudontlooksick #sickbutinvisible #chronicillnesswarrior #infusion #ivig #1inamillion #1in100 #rarediseaseday #raredisease #1in200
Going through our days in pain is a challenge, but I for one love that challenge. People can misinterpret our pain, that just because we don't let it show doesn't mean we are not in pain, I think I can speak on behalf of a lot of people and say that we are in a hell of a lot of pain, but we still don't let it show, and that is a  skill, a skill most "regular" people will never master. People can judge and go on like we are "making a mountain out of a mole hill" but they are just ignorant for they do not understand, and I pity them because of that. We walk through our best days and in our worst days we stand up good and tall, and smile because we are in agony  But we can go all day, all day we go,  because even if we laugh or cry, and let it show,  we will still come back, ready for more  Stay Strong! • • • • • • • • • • #klippelfeilsyndrome #kfs #sprengills #sprengillsdeformity #sprengillsshoulder #scoliosis #chronic #chronicillness #chronicpain #spoonie #spooniepain #spoonieproblems #chronicillnessawareness #raredisease #rarediseaseday #rarediseaseawareness #braininjury #tbi #tbiawareness #braininjuryawareness #mentalhealth #kfstrong #staystrong #alldaywego
Don't forget to check out our reader submissions in this months home education/home schooling magazine. Free to download in order to gain access to all the submissions, with plenty of resources and community input.  This months submissions- *Why do you home educate? *Rare disease day 2019 *Scouting- Founders Day Photographs *Why do you love home education? *A home ed half term *What did you not learn during your school years that you now incorporate into your own home school journey? *Why did you decide to home educate? *Parent submission letter to Anne Longfield discussing the Home Education Bill in the UK  #homeedlookslikethis #homeeducationlookslikethis #homeedders #homeschoolinstagrammers #homeeducation #homeschool #homeschooling #homeschoolers #unschoolers #unschoolinglife #worldschoolinglife #worldschooling #worldschoolers #showyourrare #rarediseaseday #scouting #foundersday #childrenscommissioner #halfterm #homeschoolcommunity #homeeducationcommunity
#repost @amwrapuk ・・・ On 6 April Rachel and @burpeesoverthebar will be taking to the floor for a very special CrossFit challenge⚡️A 10 hour alphabetical WOD marathon of 20 WODs A-T (The Girls plus Hero WODs) to support Rose 🌹 who is 7 years old and has the very rare disease A-T. They are aiming to raise £2k to help Rose’s family support her through a clinical trial and also to make a sizeable donation to the @atsociety who have supported the family since Rose’s diagnosis last year. The event is being held at @m_squared_fitness in Manchester (8am-6pm) - come and join in with the WODs 🏋🏼‍♀️ eat cake 🧁 and buy some raffle tickets 🎟. They also need sponsorship - link in bio 🙏🏻 ⚡️As featured in @morningchalkup and @talkingelitefitness episode 10!⠀ ⠀ #amwrap #amwrapuk #amrap #myfitgift #crossfit #gymspiration #charityevent #charitywod #ataxiatelangiectasia #at #ataxia #atforat #clinicaltrial #givegenerously #raffleprizes #rose #raredisease #rarediseaseday #crossfitcomp #crossfitgirls #herowod #fran #gofundme #19point5 #rainhilltrials  #atsociety #talkingelitefitness #morningchalkup
On 6 April Rachel and @burpeesoverthebar will be taking to the floor for a very special CrossFit challenge⚡️A 10 hour alphabetical WOD marathon of 20 WODs A-T (The Girls plus Hero WODs) to support Rose 🌹 who is 7 years old and has the very rare disease A-T. They are aiming to raise £2k to help Rose’s family support her through a clinical trial and also to make a sizeable donation to the @atsociety who have supported the family since Rose’s diagnosis last year. The event is being held at @m_squared_fitness in Manchester (8am-6pm) - come and join in with the WODs 🏋🏼‍♀️ eat cake 🧁 and buy some raffle tickets 🎟. They also need sponsorship - www.gofundme.com/a-to-t-for-at 🙏🏻 ⚡️As featured in @morningchalkup and @talkingelitefitness episode 10!⠀ ⠀ #amwrap #amwrapuk #amrap #myfitgift #crossfit #gymspiration #charityevent #charitywod #ataxiatelangiectasia #at #ataxia #atforat #clinicaltrial #givegenerously #raffleprizes #rose #raredisease #rarediseaseday #crossfitcomp #crossfitgirls #herowod #fran #annie #cindy #grace #goodcause #charity #atsociety #talkingelitefitness #morningchalkup
When you are running with your crew on a Friday night. #friendsaremagical #enjoythemagic #deepintheheartoftexas  #rarediseaseday #ae #autoimmuneencephalitis
Within each culture, there are different view points, different approaches used that work; different timelines for success and different ways to judge what is successful. I could not be more proud of the work being accomplished by @rarediseasegh and @psalmy_bizzle.  His determination is solid.  This year, #rarediseaseday in #ghana was successful! Today, I received word from a separate organization who had the opportunity to interact and learn from #rdgi. While each step forward is not easy, the difficulty is worth it. I am so honored to be involved and aide in helping to advance their mission!  Big updates coming soon. So excited for our progress! Word is, you may see a photo of Samuel and I soon! Stay tuned!  #worldrarediseaseday #careaboutrare #showyourrare
This brought three invites to other podcasts (stay tuned). Thanks @dnaradio for handing me the mic.  #aplasticanemia #rarediseaseday  Listen here: http://dnapodcast.com/episodes/2019/2/1/98-lydia-seiders-on-aplastic-anemia  Photo credit: @melisaconroyphotography
Smiles regardless... safe way to walk around at Mayo... having a good day #kcna2 #geneticdisorder #bravekids #rarediseaseday #epilepsyawareness #geneticdisorder
Seit ein paar Tagen habe ich einen flauen Magen, starke Appetitlosigkeit und ich kann viele Lebensmittel nicht mehr essen weil mir sofort übel wird🤢. Dabei liebe ich essen doch so sehr💔. Hat jemand Tipps gegen diese Art von macenproblemen ??🌱 Bin für jede Antwort dankbar 🙏🏼#rheumalicious#rheuma#rheumatoid#rheumaliga#rheumatology#relapsingpolychondritis#polly#autoimmune#disease#autoimmunedisease#autoimmun#krankheit#autoimmunkrankheit#chronicillness#chronischkrank#seltenekrankheiten#raredisease#spoonie#gesund#gesundheit#cushingsyndrom#potd#inspiration#girly#weheartit#showyourrare#setzeinzeichenfürdieseltenen#rarediseaseday
Meet brave Madison...⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ repost via @iamkellybacks:⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ "Alone we are rare. Together we are strong." #showyourstripes #rarediseaseday⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ A rare disease is any disease, disorder, condition, or illness affecting fewer than 200,000 people in the United States. There are approximately 7,000 rare diseases & more than 90% of them are without an FDA approved treatment.⠀⠀⠀⠀⠀⠀⠀⠀⠀ .⠀⠀⠀⠀⠀⠀⠀⠀⠀ So here's a little background on my rare little warrior. Madison was born full term and healthy but suffered from meningitis at 11 days old. To this day we don't know how or why she contracted the disease. This rare disease caused a traumatic brain injury which left her with a multitude of complications including 2 more rare diseases: infantile spasms (a catastophic form of epilepsy) and diabetes insipidus (a disorder of salt and water metabolism). We need more information, more treatments, & more cures to ultimately give Madison and all kids like her a chance at living life to the fullest.⠀⠀⠀⠀⠀⠀⠀⠀⠀ .⠀⠀⠀⠀⠀⠀⠀⠀⠀ Today we're helping to spread awareness in honor of #rarediseaseday in the hopes that more research & funding will be made available to help fight these rare diseases and provide relief to all of those in need. ❤️⠀⠀⠀⠀⠀⠀⠀⠀⠀ .⠀⠀⠀⠀⠀⠀⠀⠀⠀ .⠀⠀⠀⠀⠀⠀⠀⠀⠀ #nogoing Backs #miraclemaddie #ozzieswarriors #rarediseaseday #showyourstripes #careaboutrare #meningitis #survivor #infantilespasms #epilepsy #epilepsywarrior #diabetesinsipidus #hypothyroidism #hypopituitarism #traumaticbraininjury #tbi #cvi #specialneeds #specialneedsmom #honestmotherhood #mommyblogger #momblog #blogger #blog #advocatelikeamother⠀⠀⠀⠀⠀⠀⠀⠀⠀ .⠀⠀⠀⠀⠀⠀⠀⠀⠀ .⠀⠀⠀⠀⠀⠀⠀⠀⠀ .⠀⠀⠀⠀⠀⠀⠀⠀⠀
जो मरीज कई डॉक्टर को दिखा चुके हो या पुरानी बीमारी हो या पैसा बहुत लगता हो इलाज में या बहुत परेशान हो तो एक बार अवश्य मिले  डॉक्टर साहब के मिलते जुलते नामों से सावधान रहें, पता  ढाका: ढाका कॉमप्लेस, टेम्पो स्टैंड (चाहत वस्त्रालय) निकट अप्सरा बैरगनिया रोड ढाका pin 845418 समय 9:00 बजे से 4:00 बजे  सोरपनिया: pin 845427  OPD:8 बजे सुबह से 8बजे शाम तक और 24 घंटे इमरजेंसी सेवा उपलब्ध,  WhatsApp नंबर 9006784460 Facebook :https://www.facebook.com/Abdullah-Nursing-Home-1753169114977085/  Dhaka map :https://goo.gl/maps/g6SaAuzTEoR2 Sorpaniya map:https://goo.gl/maps/3kNuE9ifzyQ2 Home map:https://maps.google.com/?q=26.653273,85.221904&hl=en&gl=us https://abdullahnursinghom.wixsite.com/website  बहुत जल्द बहुत सस्ता तमाम प्रकार के ऑपरेशन और डिलीवरी कराने की आधुनिक सेवा उपलब्ध होगी  #bihar #motihari #pixlr #picture #potrait #nursinghome #lifestyle #health #disease #acnetreatment #womenhealth #hairtreatment #kidneydisease #skintreatment #doctor #treatment #relive #rarediseaseday #diseases #heartdisease #diagnosis #raredisease #chronicdisease #india #hindi  #heartdisease #awsome #change #physician #pediatrics
Орфанные заболевания - в общем виде это те заболевания, которые встречаются очень редко(около 5-7 тысяч таких болезней). И хотя число пациентов с каждым из диагнозов сравнительно невелико, всего в мире от орфанных заболеваний страдают около 300 миллионов человек. Не болейте😷 #showyourrare #rarediseaseday
जो मरीज कई डॉक्टर को दिखा चुके हो या पुरानी बीमारी हो या पैसा बहुत लगता हो इलाज में या बहुत परेशान हो तो एक बार अवश्य मिले  डॉक्टर साहब के मिलते जुलते नामों से सावधान रहें, पता  ढाका: ढाका कॉमप्लेस, टेम्पो स्टैंड (चाहत वस्त्रालय) निकट अप्सरा बैरगनिया रोड ढाका pin 845418 समय 9:00 बजे से 4:00 बजे  सोरपनिया: pin 845427  OPD:8 बजे सुबह से 8बजे शाम तक और 24 घंटे इमरजेंसी सेवा उपलब्ध,  WhatsApp नंबर 9006784460 Facebook :https://www.facebook.com/Abdullah-Nursing-Home-1753169114977085/  Dhaka map :https://goo.gl/maps/g6SaAuzTEoR2 Sorpaniya map:https://goo.gl/maps/3kNuE9ifzyQ2 Home map:https://maps.google.com/?q=26.653273,85.221904&hl=en&gl=us https://abdullahnursinghom.wixsite.com/website  बहुत जल्द बहुत सस्ता तमाम प्रकार के ऑपरेशन और डिलीवरी कराने की आधुनिक सेवा उपलब्ध होगी  #bihar #motihari #pixlr #picture #potrait #nursinghome #lifestyle #health #disease #acnetreatment #womenhealth #hairtreatment #kidneydisease #skintreatment #doctor #treatment #relive #rarediseaseday #diseases #heartdisease #diagnosis #raredisease #chronicdisease #india #hindi  #heartdisease #awsome #change #physician #pediatrics
जो मरीज कई डॉक्टर को दिखा चुके हो या पुरानी बीमारी हो या पैसा बहुत लगता हो इलाज में या बहुत परेशान हो तो एक बार अवश्य मिले  डॉक्टर साहब के मिलते जुलते नामों से सावधान रहें, पता  ढाका: ढाका कॉमप्लेस, टेम्पो स्टैंड (चाहत वस्त्रालय) निकट अप्सरा बैरगनिया रोड ढाका pin 845418 समय 9:00 बजे से 4:00 बजे  सोरपनिया: pin 845427  OPD:8 बजे सुबह से 8बजे शाम तक और 24 घंटे इमरजेंसी सेवा उपलब्ध,  WhatsApp नंबर 9006784460 Facebook :https://www.facebook.com/Abdullah-Nursing-Home-1753169114977085/  Dhaka map :https://goo.gl/maps/g6SaAuzTEoR2 Sorpaniya map:https://goo.gl/maps/3kNuE9ifzyQ2 Home map:https://maps.google.com/?q=26.653273,85.221904&hl=en&gl=us https://abdullahnursinghom.wixsite.com/website  बहुत जल्द बहुत सस्ता तमाम प्रकार के ऑपरेशन और डिलीवरी कराने की आधुनिक सेवा उपलब्ध होगी  #bihar #motihari #pixlr #picture #potrait #nursinghome #lifestyle #health #disease #acnetreatment #womenhealth #hairtreatment #kidneydisease #skintreatment #doctor #treatment #relive #rarediseaseday #diseases #heartdisease #diagnosis #raredisease #chronicdisease #india #hindi  #heartdisease #awsome #change #physician #pediatrics
I guess I’m that old...the music of my teenage years. Had a great time, I was able to stand and rock and roll (in heels) all night long and I was shocked that cardio did not kill me 🤷🏻‍♀️ I made sure to ask for a chair when I walked in, but I did not need to use it at all. I had to move up so I had more air because I had a hard time breathing in the crowd, but otherwise zero symptoms. So happy. #gettingthere #livinlavida  Now, nine years and nothing has changed. Men have still not grown up, and drunk men are still as dumb with their pickup lines. Plus they don’t know the number one rule of #mcas : if you’re trying to get into my pants you can’t buy me dinner or drinks.... I’ll fall asleep before you get a chance to ask for the check....#thatsMCAS  #thisisdysautonomia 🤷🏻‍♀️ I haven’t missed a thing!!! Good thing I went for the music 💁🏻‍♀️ #thisisdysautonomia #raredisease #rarediseaseday  #mastcellactivationsyndrome #mcas #mastcellactivationdisorder #thisisdysautonomia #dysautonomia #dysautonomiainternational #pots #posturalorthostatictachycardiasyndrome #spoonie #spoonielife #eds #ehlersdanlossyndrome #rarediseases #tmsforacure #themastocytosissociety #notalldisabilitiesarevisible. #invisibleillness #chronicillness #ehlersdanlosawareness  #dysautonomiaawareness #genetictrainwreck #zebrastrong
When you see a patient with a rare disease, you go back to the books.  If you’re in a NP program right now and worried that you’re not going to know everything, don’t worry, you won’t. And no one will expect you to.  #nursepractitionerlife #alwayslearning
Sabia que a #hipertensiónpulmonar costuma confundir-se com a asma? Apesar da sua gravidade muitos pacientes não são diagnosticados, porque pelos seus sintomas costumam confundir-se com asma, ataques de pânico ou até um mau estado físico. #rarediseaseday #phaware #hipertensiónpulmonar #respirandoacuradahap #respirandovidacomhap #hipertensãopulmonar #hap #hope #respirareviver
🧡💜CureSMA NJ will be @libertysciencecenter for their 3rd annual #rarediseaseday event Saturday March 30th, from 11am-3pm  This event is for families 👨‍👩‍👧‍👦 and individuals🙋‍♂️ impacted by Rare Disease, like Spinal Muscular Atrophy.  Parking, Lunch, and Entertainment are only part of what's in store!  Activities for all ages, all abilities, and access to the largest Planetarium in the Western Hemisphere 😍🌠 So come out, and enjoy a day of fun, celebration, networking, advocacy, and awareness! We look forward to seeing you there 🙋‍♀️ #showyourrare #showyoucare
To launch our shiny new insta, we're doing a #tbt to our #showyourrare celebrations for Rare Disease Day 2019!  We had a fantastic meet up, and had a great time with the tempory tattoos and face gems ❤️ Big thanks to @speffpasta for your amazing gems, paints, and tattoos, and to @maaikrophone for taking pictures when we forgot to!
3.21 #worlddownsyndromeday  How to treat a person with #downsyndrome: 💜Love them. Simple. . . . #downsyndrome #downsyndromeday #acceptance #rarediseaseday #chronicillness #geneticcondition #nonprofit
Orecchini pt.1 (Ph. Neutro @foscafazioli . . . . . . . . . #picoftheday #pic #ice #cristal #lights #likeforlikes #light #lightdesign #red #focus #capture #rarediseaseday #moment #gold
Each day we are born again. What we do today is what matters the most. #chinalook#chinesedrama #lookbackatit #vapetricks #rarediseaseday #watercolor #yellownails #california_surf #weddingdress #uae #vasyllomachenko #instagrammers

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