#rarediseaseday

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Sobre MPS.

Você sabe o que acontece no corpo quando alguém tem MPS?
Aprenda e ajude a informar sobre as Mucopolissaridores. 💜🤓
#mpsday
#doencasraras
#rarediseaseday
#somostodosraros
#mpsmanausAM

Sobre MPS.
Você sabe o que acontece no corpo quando alguém tem MPS?
Aprenda e ajude a informar sobre as Mucopolissaridores. 💜🤓
#mpsday
#doencasraras
#rarediseaseday
#somostodosraros
#mpsmanausAM

With the wonderful Ndali Ijomah!🤗 About to do a soundcheck for our performance at @actelion #happiness😊

Hallie Jean, you are all that is pure, all that is love, all that is faith and hope.
You are an inspiration to many, a mystery to some and a hero to all. 💜
You are the divine light that shines in the darkness of the night. You are loved and adored, by all that meet you. You are honoured in a place higher than anyone of us, will ever know, or visit.
You are breathtaking beautiful. You have the soul, spirit and the determination to test fate.
You have allowed me to pull strength from places I never knew existed. To find inner peace in corners of concrete.
Because of you, I am strong, because of you I am love. I know nothing, will ever break me.
You have been through so much and still you amaze me everyday with your kindness, determination and will to live life, to it fullest.
Hallie Jean I am in awe of you. 💜
#pureessence #forevergrateful🙏 #filledwithlove #uptothebrim #homeiswhereiamwithyou #daughterlove#lovehertobits #beautifull #breathtaking #3yearsold #myteachermyhero #myhero #determination #rarediseaseday #rarebreed #gastroschisisfamily #gastroschisiswarrior #lookatthoseeyes #purelove❤️ #ichooselove❤️ #ichoosehappiness #iwillalwaysfightforyou

Today until the 26th, it’s National Eosinophil Awareness Week. Eosinophils (white blood cells) aren’t suppose to be found in our digestive system. This causes the white blood cells to attack the area where they are found causing inflammation, swollenness and pain due to allergies to food or allergies to the environment. Some cases no allergies are found and the body is just attacking itself. Last year Conor was diagnosed with EoE (Eosinophils of the Esophagus). Even though it’s on the rise, little is known about it. Conor has had countless appointments with EoE related issues, scopes and biopsies. He catches every little bug he comes in contact with, since EoE is an autoimmune disease and the medications cause a weaker immune system. He’s on three daily steroids and a fourth when needed, which is a lot for a little body. He will be getting his third endoscopy, a laryngoscopy and bronchoscopy in July. After much research and support groups, Conor is so blessed! Some kids have worse flare ups and are on feeding tubes. Some are not thriving, some can’t go to school, and some are on a diet to avoid 8+ common foods. This post isn’t meant to bring attention to our struggles but to bring awareness to the disease. Conor has so much courage and strength! Say a prayer for all those struggling with this rare, chronic, invisible disease today and the rest of the week. If you would like more information on this or want to donate to C.U.R.E.D, a Eosinophil not for profit research group for EoE and other diseases like Conor’s. The link is in my profile #rarediseaseday #pediatrics #eoe #disease #allhandsin

It’s an honor for me to be the Pennsylvania Ambassador for NORD.
It’s an honor for me to be an advocate for Rare Eye diseases.
But my highest honor is to be a Mom. And being this guy’s Mom makes me proud every single day.
🎶🎶🎶
Congrats and thank you to my oldest son, @mjsjr2000, for opening eyes, minds, and hearts all over the world to change what it means to thrive with Blindness and live with Rare Disease.
🎶🎶🎶
@rarediseasedayus @nationalbraillepress @blindnewworld @nfb_voice @aphfortheblind @twoblindbrothers @nobarriersusa #blind #crb1 #raredisease #rarediseaseday #rareeyedisease #blindness #piano #tuxedo #pianoman #PowerOfTheDream #TerryKelly #ChangingWhatItMeansToBlind @globalgenes #pennsylvania #philly @buckshappening @buckschamber @northamptonpatch @buckscouriertimes

On our way to the doctor 🙈 Time for a musical moment with @johnmayer and @musicalchemist #pulmonaryhypertension #music

If you’ve been following me for a little while you may have seen my post about my oldest daughter and her diagnosis of Von Willebrand Disorder. My youngest daughter was also recently diagnosed, though she doesn’t have severe nosebleeds like my oldest. Today was my 3 year olds first visit to the Hematologist at Hopkins. My girls are such incredible examples to me. It’s amazing how each day I school them at home but each day they are teaching me also. They are brave, strong, and make the best out of every situation. I pray for their future and all the “what if’s” it holds.
#vonwillebrands #vonwillebranddisease #vonwillebrandsdiseaseawareness #vonwillebrand #blooddisorder #hematology #bleedingdisorders #allsaintshomeschool #toddler #brave #strength #fighter #thisisvonwillebrand #thisisthree #nosebleeds #childhood #diagnosis #hereditarydisease #rarediseaseday #rarediseases #homeschool #homeschoolmom #homeschooling #catholicwife #catholicmom #mama #mamabear

A clip from my original song “Rise.” 🤗 watch the full-length vid at Youtube.com/ChloeTemtchine or click on link in bio #pulmonaryhypertension #music #singer🎤

We are very excited for the Australian Pituitary Foundation’s brand relaunch ... we are looking forward to sharing our vision for the future with you. Stay tuned!
#rarediseases #pituitarytumour #apfoundation #pituitarygland #pituitary #pituitarygland #cushingsdisease #raredisease #rarediseaseday #acromegaly #adultgrowthhormonedeficiency #craniopharyngioma #diabetes #hypopituitarism #tumour #prolactinoma #charity #nfp #notforprofit #follow #followus

Meet our second Executive Co-chair, Kimberly Statham. Kim is a senior commercial lawyer who has undertaken leadership roles across leading international and national organisations. Kim holds a Master of Laws at the University of Sydney and was previously a casual sessional academic at Western Sydney University. Kim joined the Board formerly as Company Secretary prior to joining Dr Ian Wang as Co-chair. With Ian and Kim’s strategic guidance and support from our committed Board, we are dedicated to raising awareness so that we can continue to support families living with pituitary related conditions.
#rarediseases #pituitarytumour #apfoundation #pituitarygland #pituitary #pituitarygland #cushingsdisease #raredisease #rarediseaseday #acromegaly #adultgrowthhormonedeficiency #craniopharyngioma #diabetes #hypopituitarism #tumour #prolactinoma #charity #nfp #notforprofit #follow #followus

Meet our brilliant Executive Co-chair, Dr Ian Wang. Ian is a fully qualified Neurosurgeon specialising in Minimally Invasive Techniques for all neurosurgical conditions. He has a special interest in pituitary and spinal disorders and is one of few neurosurgeons in Melbourne who has undertaken an extended overseas Fellowship training in endoscopic pituitary approaches and minimally invasive spinal surgery. Ian is also a Senior Lecturer for the Department of Surgery, St Vincent’s Hospital, the University of Melbourne. We are extremely fortunate to have Ian as our Co-chair and are very grateful for the support and direction that he has provided since joining the Board.
#rarediseases #pituitarytumour #apfoundation #pituitarygland #pituitary #pituitarygland #cushingsdisease #raredisease #rarediseaseday #acromegaly #adultgrowthhormonedeficiency #craniopharyngioma #diabetes #hypopituitarism #tumour #prolactinoma #charity #nfp #notforprofit #follow #followus

L’amicizia è così non ha bisogno di essere descritta basta una foto uno sguardo e un sorriso per essere espressa. ❤️
#friend #mydearfriend #complicity #smiling #together #classy #outfit #nursing #passion #instalike #instagood #like4like #follow4follow #palermo #rarediseaseday

Last month of hardcore training. GFNY this weekend for 100 miles. Perfect training for Ironman Nice. My goal in this race is to give my legs a hardcore feeling of what’s coming in 5 weeks. More than 10000 feet of elevation from NYC to Bear mountain my goal is to finish this safely. I decided a few months ago to dedicate this race to a little fella who has a rare disease. On my instagram I posted a link few months ago where you can donate for a good cause! I pray and have faith that your heart can either share the link or donate! There are ways to support each other ! And truthfully for me ... I believe the power of a prayer is beyond powerful ! I also like to combine it with physical endurance. Please donate and pray for me to make it safe ! #bebrave #rarediseaseday #campagnolo #gfny #garmin #ironman #triathlete #biking #nyc #bearmountain #100miles Last month of hardcore training. GFNY this weekend for 100 miles. Perfect training for Ironman Nice. My goal in this race is to give my legs a hardcore feeling of what’s coming in 5 weeks. More than 10000 feet of elevation from NYC to Bear mountain my goal is to finish this safely. I decided a few months ago to dedicate this race to a little fella who has a rare disease. On my instagram I posted a link few months ago where you can donate for a good cause! I pray and have faith that your heart can either share the link or donate! There are ways to support each other ! And truthfully for me ... I believe the power of a prayer is beyond powerful ! I also like to combine it with physical endurance. Please donate and pray for me to make it safe ! https://b-brave-by-the-payne-family.everydayhero.com/us/b-brave

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