Rarediseaseawareness Photos & Videos on Instagram

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abeautifulmindnpo

We are so excited to share our Mandela day involvement with @_nicolecapper #Repost @_nicolecapper with @get_repost ・・・ MANDELA DAY 🇿🇦 Unity. Courage. Strength. Change. Thank you Madiba for your legacy. Today we climbed the highest freestanding peak in the Drakensberg. 21kms, 1.5km vertical ascent, up to 3005m altitude. Ordinary South Africans, challenging ourselves to achieve something extraordinary for a purpose. Thank you to every single person who climbed & donated, and to @cathedralpeakhotel @trek4mandela for making today possible. @caring4girls Photo by @erikmvermeulen . . . #trek4mandela #cathedralpeak #cathedralpeakhotel #mandeladay #mandeladay2018 #rare #rareheights #rarediseaseawareness #brain #braininjurysurvivor #braininjuryawareness #abeautifulmind #peak #heights #strength #awareness #courage #climbing #climb

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indonesiacareforrarediseases

Inilah yang unik. 2 anak ini sangat mirip, tapi tahukah kamu, bahwa 2 anak ini bukan saudara kandung, mereka adalah anak dari beda ibu dan juga beda ayah. Kembar tapi beda 😉 2 anak ini sama-sama penyintas Pierre Robin Sequence (PRS) 😊 #indonesiacareforrarediseases #ic4rdminigathering #kumpulseru #pierrerobinsequence #rarediseaseawareness

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tripawd.princess

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pomcisland

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abeautifulmindnpo

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tripawd.princess

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memoires_of_a_nikki

Wow!!!! I'm up to 333 followers! Thank you all who care enough to view my feed and share my story. The connections I make in life are priceless. Thank you from the bottom of my heart for being apart of my journey through the universe🌠 . . . #chronicillnesswarriors#IIH #fambam #blessedtofightanotherday #thankyou #supportfam #numerology #friendsacrosstheworld #luckynumber #youmattertome #loveyoureverything #luckytohaveyou #friendsbecomefamily #chosenfamily #rarediseaseawareness #pseudotumorcerebri💙💚 #neuroscience #research

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makelemonadewithlupus

beach bébés

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tripawd.princess

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edsbrenna

Well friends, I’ve got good news and bad news. Good news: My heart and valves are in perfect condition! Bad news: The cardiologist was unable to help with the ongoing pain and migraines. I was hopeful for answers this time around but just like every other time, there aren’t any. Thank you all for you kind words and prayers, they are ever so appreciated 💛 . . . . . . #edswarrior #ehlersdanlossyndrome #eds #edstype3 #POTS #posturalorthostatictachycardiasyndrome #dysautonomia #ehlersdanlosawareness #rarediseaseawareness #raredisease #dance #dancer #pointeshoes #migraine #migraineawareness #cardiovascular #cardiology

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clinuvel_pharmaceuticals

Even just a few minutes of light exposure may trigger a phototoxic reaction in EPP patients. Because patients avoid light exposure, especially sunlight, many people with EPP have low levels of vitamin D, necessary to maintaining a healthy bone structure. . . . #healthybones #EPP #erythropoieticprotoporphyria #vitamind #phototoxicity #raredisease #sunlight #porphyria #photoprotection #skin

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bplplasmallc

Remember - no appointment is necessary! BPL respects your time and schedule when it comes to valued donors. We hope you'll stop by today. • • • • #plasma #plasmadonation #donate #dogood #health #rarediseaseawareness #lifesaver #savelives #plasmaproteins #health #healthy #healthandwellness #bplplasma #appointment

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edsbrenna

Going on day 4 of relentless migraine and week 5 of never ending sore throat. . Scheduled for an allergy test soon to see if the sore throat and flu-like symptoms could be from something my body doesn’t agree with, hopefully it’s not too harsh as my skin is quite sensitive. . . Migraines aren’t just a headache. Migraines are far more thank “i’ll take a pill and head back to work” or “i’ll just take a nap and get back to things later”. only few and far between truly understand the real and raw pain of a migraine, and it makes my heart ache knowing that there are others out there suffering the exact same way. . . . . . . . #edswarrior #ehlersdanlossyndrome #eds #edstype3 #POTS #posturalorthostatictachycardiasyndrome #dysautonomia #ehlersdanlosawareness #rarediseaseawareness #raredisease #dance #dancer #pointeshoes #migraine #migraineawareness

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abeautifulmindnpo

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indonesiacareforrarediseases

Keceriaan acara Halal Bihalal IC4RD Jatim Raya di Kebun Raya Purwodadi, tanggal 14 Juli 2018 . Terima kasih kepada dr. Ariani, Sp. A (K) dari @fatima_childcenter @fatimachildcenter Terima kasih tim IC4RD Jatim, MOVE dan seluruh teman-teman volunteer yang telah banyak membantu hingga acara ini bisa terlaksana dengan lancar dan sukses 😊 #indonesiacareforrarediseases #ic4rd #jawatimur #kebunrayapurwodadi #eventjawatimur #eventjatim #eventmalang #anakberkebutuhankhusus #tumbuhkembanganak #halalbihalal #rarediseaseawareness

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rarediseaseaintgotme

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more.than.midodrine

Getting ready for that bi-monthly research hospital grind. I’m ready to enjoy one last day at home and then am hoping for big things as we go over some test results! Image description (added at a later date): a top-down photo of a powder blue duffel bag lying on a tile floor. Next to the bag are maroon Adidas with white stripes and a brown journal that has a card in-scripted “stuff and things” taped on the cover with copper washi tape. End of image description. #accessibilitymatters

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camdenslchjourney_

Meet Camden, he is 18 months old and was recently diagnosed with LCH Multi (Langerhans Cell Histiocytosis) a rare form of cancer/immune disease. Camden has a love for music, anything with sounds and especially enjoys Mickey Mouse Clubhouse and friends. He has a five year old brother named Aiden that he also loves and adores. Camden has been battling with being in and out of the hospital since October of 2017. With having multiple issues with his liver, spleen, and bone marrow.Camden has had to undergo surgery for a medi port placed in his chest so that he can be easily accessed for IV medicines and blood work and transfusions. Its been a struggle watching my baby go through this, it’s heartbreaking and he will need life long treatment. While trying to be Super Mom to both Camden and Aiden, we need your help. All proceeds and donations will go to transportation, medications, and for me to be able to continue to support and focus solely on Camden’s care. Gofundme: gofundme.com/Camdenslchjourney There is life after his diagnosis follow #camdenslchjourney. Would like to reach out to us email: Camdenslchjourney@yahoo.com Want to stay updated on #Camdenslchjourney follow us on Facebook: https://www.facebook.com/CamdensLCHjourney/ #histiocytosisawareness #langerhanscellhistiocytosis #histiocytosisawareness #histioawareness #ididnottakepicsthankyoucookschildren #histiocytosis #blogging #momofboys #momblogger #camdenslchjourney #rare #rarediseaseawareness #fundraising #gofundmedonations #gofundme #gofundmecampaign #thereislifeafterdiagnosis

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makelemonadewithlupus

✨✨✨ . . . . . . . . Kehlani: you deserve what you need

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jacks_butterflies_australia

Koolen-de Vries Syndrome Awareness Day is observed annually on July 17. The goal is to raise awareness for Koolen-de Vries Syndrome (KdVS) and to bring people together across the globe to show support for those who are impacted by this rare genetic syndrome. Why the 17th? Because the microdeletion or the KANSL1 mutation is located on the chromosome 17. Go to kdvsfoundation.org for more information about Koolen-de Vires Syndrome. #rarediesease #rarediseases #rareaware #rarediseaseawareness #rarediseasesaustralia #rarefamilies #familysupport #nonprofit #childrenscharity #nonprofitcharity #australiancharity #kdvs

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edsbrenna

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curefa_org

“Positivity is a tough thing when you have FA, but it has undoubtedly given me a wider scope to see where everyone is coming from. It’s allowed me to see in color, rather than black and white. FA has given me time to wander a bit and soak rather than move point to point through life.” ✨ Meet @sirGavin7 🙋‍♂️ in this week’s #MeetTheCommunity interview series on the Ambassador Program blog. Gavin is a definite advocate for connecting with the FAmily. He enjoys going to the movies 🍿 reading 📚 and weight training 🏋️‍♂️ ➡️ Follow the link in the bio to read more 👆 🎮 CUREFA.ORG/MEET-THE-COMMUNITY 🎮

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clinuvel_pharmaceuticals

Phototoxicity is a toxic reaction from a substance found in the body that is triggered by light. In EPP, phototoxicity occurs when PPIX, found in excess in the skin, is excited by visible light. Phototoxicity results in damage of the skin and surroundings which can only be prevented through photoprotection of the skin. . . . #phototoxicity #EPP #erythropoieticprotoporphyria #photoprotection #sunlight #skin #porphyria #raredisease #porphyriaawareness #diseaseawareness

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abeautifulmindnpo

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andreahookrealtor

Spent an amazing couple of days in SF talking wine and and making an impact and nights watching the Battle of the Bay with two amazing chicks! Blessed to be on this journey with an amazing company! #OneHope #CRUSH2018 #ChangeYourWineChangeMoreLives #RareDiseaseAwareness #AlexsLemonadeStand #SonomaFires #GiantsWon #SFGiants

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bryce_schroers

Tagged along with Dave Proctor for a little run today. He’s currently running across Canada (7200km) trying to break the record, his goal is 66 days. He’s also raising awareness and fundraising for the rare disease foundation. Check out outrunrare.com to learn more. Great running with you Dave! . . . . #run #running #runner #runners #runnerstyle #sask #saskatchewan #saskskies #sasklandscape #marathon #ohiguessthatsamarathon #rare #raredisease #rarediseases #rarediseaseawareness #rarediseasefoundation #daveproctor #sundayrun #marathons #marathonrunning #marathonrunner #kmsforbreakfast #adventurelife #iphone7 #iphonephotography

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wynandawibowo

SPECIAL KIRANA bonus Oleh Wynanda B. S. . Hai, ini aku, Kirana, sebelumnya kan aku belum sempat memperkenalkan diri, nah sekarang sebagai bonus, aku mau mengenalkan diri dulu. . Nama panjangku adalah Kirana Aisha Putri Wibowo. Kirana berarti cantik bersinar, ray of light. Aisha berarti sehat, ceria. Putri Wibowo sih sama seperti kakakku, karena kami adalah putrinya pak Wibowo hehehehe. . Tahu gak kenapa orangtuaku memilih nama ini? Kalau Kirana sih sudah disiapkan sejak aku masih di perut mama, demikian juga dengan Putri Wibowo, kan samaan sama mba Kasih, tapiii kalau Aisha, baru ditentukan sesaat setelah aku lahir. Karena aku lahir tidak menangis, dan langsung dibawa ke NICU, makanya mama dan papa akhirnya memilih menyematkan Aisha di tengah namaku, mereka berharap aku tetap sehat, ceria. . Kata mama, aku sangat istimewa, aku adalah peri kecil dan juga pejuang tangguh. Katanya lagi, aku memberikan bukti kepada dunia bahwa sungguh Allah Maha Besar, meski kondisiku sangat spesial, aku telah menginspirasi mama untuk membuat support group demi memberikan dukungan bagi teman-temanku yang lain dan keluarganya. . Saat ini usiaku 4 tahun lebih, aku masih non verbal, belum bisa jalan, kecerdasanku terganggu, perilaku juga terganggu, dll deh. Aku memiliki total lebih dari 20 koleksi kondisi khusus. Banyak yah koleksiku? Kata mama, semua itu lah yang menjadikan aku sangat spesial, dan membuat mama semakin kaya. Tapi kamu jadi tahu kan, alasan judul kisahku ini? Apa saja koleksiku? Nanti akan kuceritakan yah 😉 . Sekian perkenalanku, nanti aku kenalin juga yah sama mama, papa dan kakakku yang istimewa 😊 Makanya ikuti terus kisahku ini hehehehehe. #specialkirana #kirana #pejuanglangka #pejuangkecil #rarediseaseawareness

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filipinoftm

Currently dealing with a cavity that is steadily headed towards me needing an extraction. The left side of my face is a bit swollen. Part of having celiac disease, from what I’ve read, is weak tooth enamel. Also, due to my health issues connected with PASLI, I’ve had malnutrition issues in the past from not being able to eat well while fighting off numerous illnesses. None of these health issues has helped me have healthy and good teeth. I don’t have dental care at the moment because I can’t afford it, so I have to stick this out until I can afford to go to the dentist. #celiacdisease #paslidisease #raredisease #rarediseaseawareness #immunesystem

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rachel.leigh197

Well, Baby Jay is in a flare again, and a yucky one. He has sores in his mouth and his feet and hands are puffy and painful. This video is yesterday morning, just shows how quickly things change with this disorder. He was up screaming in pain most of the night, today his fever went to 103. I gave him the prednisone and his fever is back to 99.5. I don’t post these things for people to feel badly for him, I post this for awareness. There HAS to be more research done for these kids, they deserve it, and Baby Jay needs it. PFAPA doesn’t define James in any way though, he is the amazing❤️ #jamesforrest #babyjay #pfapa #raredisease #rarediseaseawareness

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because_of_blake

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abeautifulmindnpo

“Collaborating with an extraordinary cause for rare diseases and rare heights - watch this space for an exciting video launching soon and go follow A Beautiful mind on facebook to see more on the Arts Fair for 2018” - @abeautifulmindnpo . . . @_nicolecapper @nicolebraycapper @nandinakoster @mrs_south_africa @michellesmith007 . . #rare #rarediseaseawareness #brain #braininjury #braininjuryawareness #braininjurysurvivor #rareheights #specialneeds #specialneedschild #seizures #brain #npo #epilepsy #kid #family #child #socialimpact #givingback #philanthropy #payitforward #helpothers #causes #lifechanging #abeautifulmind

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brittany.marie8

Pretty obsessed with the view from my hotel room window this morning 😍😍 So excited for the speaking event in the stadium today!

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jacks_butterflies_australia

Brisbane - our Gala Ball is coming your way in October! This will be our first major fundrasing event. We are now taking bookings, accepting donations for our raffle and fielding enquiries for corporate sponsorship. Visit our website or Facebook page for more details. #rarediesease #rarediseases #rareaware #rarediseaseawareness #rarediseasesaustralia #rarefamilies #familysupport #corporatesponsorship #nonprofit #childrenscharity #nonprofitcharity #australiancharity #queensland #brisbane #galaball

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more.than.midodrine

Have you subscribed to my YouTube channel?! Today I posed a physical therapy routine video! I’m slowly learning how to edit, so please excuse my mistakes! 👵🏼 Expect more videos soon, including a medical travel vlog next week! The link is in my bio! Image description (added at a later date): A screen capture of a youtube page. There are three thumbnails of videos on screen, all by “more.than.midodrine”. The first video thumbnail is Lacey sitting on a yoga mat with the words “Physical Therapy Routine Ehlers Danlos Syndrome”. Next thumbnail is a close up of Lacey, wearing a peach colored t-shirt with her long wavy curly hair parted to the side. She has round tortoise shell glasses on. Text to the side says “Ehlers Danlos Challenge”. The last thumbnail is Lacey laying down on her yoga mat with her head turned to look at the camera. She is wearing all black athletic wear and a black hat covering her long hair. End of image description. #accessibilitymatters

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thetarahburrell

A good friend suggested I sit down and write everything down. I’ve thought about it. I’m just at a point where I don’t even have the mental capacity to do even that. #portraiture #coloradophotographer #photographer #author #artist #professionalphotography #onedayatatime #recurrentmiscarriage #pregnancylossjourney #upanddown #rarediseaseawareness #Colorado #portraits All photo credits go to @lilmouseontheprairie

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mimisrnyjourney

What's your motivation? This is mine! This little Sunshine girl, and her brother, and sister. Before my weight loss IIH made me unsteady. I fell, a lot. But one particular fall opened my eyes to my reality. I was carrying this sweet baby girl, and I lost my balance, I knew I was going to fall, and I was on concrete! I lifted her up as high as I could, and I went down hard! Really hard! My jeans tore, and my knees were scraped, and bloodied, but my grandbaby was safe. She didn't make contact with the ground, thank goodness! I was battered, and bruised, and so embarrassed! More than that I was angry! Angry at my body for being so broken! Angry at myself for not fighting harder to find a way to heal! I stopped carrying my grandchildren after that fall. I wanted more than anything to be able to hold them, but I just didn't trust my body. Now, though, after all of this weight lost, I can carry them!! I am fixing myself one pound, and inch, and step at a time, and it feels amazing!! #gettinghealthy #takingmylifeback #iih #ptc #rny #rnygastricbypasssurgery #reclaimingmytime #livingagain #healing #iamstrong #fightlikeagirl #iamrare #rarediseaseawareness #idiopathicintercranialhypertension

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nanalolacouture

Wow! So Honored to be introduced this way! Thank you Aleah Leigh of Dragon Lady Production and Equal Events! Will tag all models and creatives as possible. #vougemagazine #myastheniagravis #highendmodels #rarediseaseawareness #whenyouseeit #blackgirlmagic #highendmodels #jayzandbeyonce #todrickhall #whatabeauty #getitgirl

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_asian_adventurer_

Time to make a difference! @rarediseasessa has launched this amazing initiative where they want to recognise all the rare diamonds that are out there in various different categories of the rare diseases world. See more relating to this initiative here https://www.rarediamondawards.co.za . . Voting for nominees in the various categories has also been opened via the following methods - By liking the nominees photos and sharing it on Facebook https://m.facebook.com/rarediseasesSA/albums/1797805900298895/ - By voting for nominees on the website https://www.rarediamondawards.co.za - SMS the word “ Vote + Nominee’s name” to 36106 at a cost of R5 (I think this option may only be applicable in South Africa) . . This is the first time that an event like this being held in South Africa so it would be amazing if it is a great success! #raredisease #rarediseasessa #rarediamondproject #rarefamily #care4rare #awareaboutrare #rarediseaseawareness #rarewarrior #spoonie #chronicillness #advocacy #supportgroup #recognition

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thisisdolphin

This is what the daily preparation looks like for my daughter. Gotta do this every night! #shesafighter #nord #raredisease #ucd #ureacycledisorder #rarediseases #asa #argininosuccinicaciduria - - - I am looking for a way to spread awareness to asa and the other urea cycle disorders. One way I have started, is by utilizing my #stream on @twitch to spread awareness. Also, any #donations, #subscriptions, #bits, or any other form or proceeds that come from #streaming will go towards paying for her treatment, and #donating to research, organizations, and families in need. Come stop by and have some laughs, watch games, and you can even learn about the disorder my daughter has. Help me get #awareness about the rare disorders! Link is in bio! - - - #twitch #twitchstreamer #streamer #charitystream #charity #donating #donatingiswonderful #contribute #changetheworld #makeachange #rarediseaseawareness

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chefnique84

In a lot of pain today, but I alway say it lets me know I'm alive. No pain, no gain they say. Life is real. #roadtorecovery #rarediseaseawareness #interstialcystitis #fibromyalgia #tumorfree #survivor

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jacks_butterflies_australia

We've said it before and we'll say it again!! WE WANT YOU! Come and join our community supporting children and families with rare diseases. Go to https://www.jacksbutterflies.com.au/general-member-registration-form (link in bio) and sign up as a general member. We are a member based organisation. You don't have to be an active member but there is plenty to volunteer for if you do. We do not hold regular meetings so you don't need to be concerned with it being very time consuming. We are looking for people to join our fundraising team in Brisbane and Adelaide. As well as the Gala Ball team in Brisbane. We have our AGM scheduled for August/September so now is the time to get on board so you can have your say on who you want to be on our board (or you may want to nominate yourself) #raredisease #rarediseases #rarediseaseawareness #rareaware #rarefamilies #careaboutrare #nonprofit #nonprofitcharity #childrenscharity #Adelaide #southaustralia #Brisbane #Queensland #membership #boardmembers #boardnominations

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limbsofheaven

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bruminaround

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seerarerun5k

Join us anytime during Oct. 5-7 for the SEE RARE RUN VIRTUAL 5K benefitting the National Organization of Rare Disorders / Undiagnosed Diseases Network Patience Assistance Program. See bio for web site and link to register!

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nanalolacouture

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prunebellymommy

To all those who want to show support for Brennan but don’t know how, here is the perfect opportunity!! We have great quality T-shirt’s, tanks and baseball tees on sale to help show support and spread awareness for Prune Belly Syndrome. We even have youth sizes available!! Click the link in my bio to get your shirt today! . . . . . #prunebellysyndrome #prunebellysyndromefundraiser #pbssurvivor #prunebellysyndromeawareness #PBSawareness #iloveaprunebellybaby #prunebellystyle #tshirtfundraiser #tshirtlovers #foragoodcause #kidneydisease #kidneytransplant #ESRD #renalfailureawareness #kidneydiseaseawareness #donatelife #givelife

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georginapantano

Living with #Scleroderma: Not always the most obvious to see. But still such a horrible debilitating disease that I believe 🙏🏼 needs to be spoken about and made known more widely out there.. #raisingawareness #invisibleillnessawareness I'm not always in a wheelchair or may not always need my stick. I put on my makeup and look ok, but in fact #livingwithscleroderma is hard, tiring and painful every day. I know I cope pretty well and really because I don't give myself any other choice. I don't want to be miserable, I don't want the atmosphere around me to be miserable or for those I love that live this with me. I know I'm going to have to deal with this either way so I choose to push through it and keep smiling. Which I guess can fool people sometimes into thinking I'm fine or better when they see me.. I might be having a better day or smiling through the pain and exhaustion - but unfortunately for anyone living with #chronicillness it's never fully 'better' but sometimes just less crappy - and those times I'm so happy for as I have a moment of feeling a little more 'normal.' 💗 In the second photo I've got my midline at the top of my arm that's been kept in for the month for my iloprost treatment and then my retuximab infusions. I've also been a pin cushion for my cardiac MRI today 🙈 and still covered in dressings for digital ulcers and just sensitive areas that could flare up if left uncovered 😏 Also struggling to actually take the photo and hold my phone because of the tightness and loss of mobility in my hands 🙄🙄🙄 Life!!! #sclerodermawarrior #invisiblefight #livingwithchronicillness #autoimmuneawareness #knowscleroderma #hiddenstruggles #rarediseases #rarediseaseawareness #understanding #spoonielife #keepongoing #strength xxx

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candus813

I didn’t think I would be in this waiting room again, as I faced all of my genetic testing last year. Yet, here I am. I’m not giving up on healing. I’m trusting in the scientific research that is being done in genetic mutations and diseases. By the time it’s needed, I’m believing there will be a way to battle every symptom. I am choosing hope. I am choosing to seek joy in every circumstance. I am choosing to aid in the research ambitions of these wonderful doctors. I’m fighting back in every way that I can. #peoplehopetribe #geneticssuck #keepinghopealive #seekjoy #thisisarealsmile #iadc #indianauniversity #geneticresearch #waitingroom #fightbackwithjoy #makingadifference #lifeisbeautiful #hope #dowhatyoucanwithwhatyouhave #pushon #healing #lifeisanadventure #lightinthedark #faith #rarediseaseawareness #mstd #hereditary #raredisease #rarediseaseadvocate #neuroscience

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marita_minnie

Lived our BEST #saari lives this weekend!!! Celebrating two beautiful souls joining in marriage❤️ Aunty @evashneereddy we wish you a blessed,happy,joyful and beautiful journey with your #polisieman Thank you for having us❤️💜Enjoy your honeymoon!!!💫🤩 come back bearing babies🙏🏻😂🤩. . . . . . . #saaridress #indianwedding #hindu #weddingvibes #bevenwedsvash #fostermommy #fosterkidsrock #momanddaughtertime #rarediseaseawareness #prsbaby #pierrerobinsequence #feedingtubeawareness #littlebjird #willemsadventure #iwishiwasanindianlady #lolnoreallytho #sobeautiful #reallygoodfood #biryani #foodporn #hennatattoo

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thejordankortenhoven

#AllBoardTheFeelsTrain. I may have first heard this tune on @scandalabc, but all these years later, it never fails to stir up all kinds of deep emotions in me because of how beautiful it is. I experienced another loss just this past weekend in my #raredisease family, and while I didn’t have a chance to meet Betsy, it’s good to know that she’s no longer in any pain. I’ve been hearing a lot of stories about her and how she was a #rarediseaseambassador just like I am, and now, for her and the rest of the ones who went to Heaven too soon, and for the friends I already have & haven’t met yet, I’m going to work even harder to spread awareness for #CLOVESSyndrome and #MacrocephalyCapillaryMalformation. This particular song, The Light, by @thealbumleaf has been on repeat because it sounds like it reflects on the kind of person that Betsy was 🍀💚 #RestInHeaven #FlyHigh #CLOVESSyndromeAwareness #RareDiseaseAwareness #RareDiseaseAdvocate #Music #TheAlbumLeaf #TheLight #IntoTheBlueAgain

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nanalolacouture

The Lovely Miryam Jacob wearing the Pink Polka Dot cocktail dress, part of the Eva Maine Collection. Photographer: Esther May MUA: Beth King Hair: @nins_hair Designer:@nanalolacouture Edinburgh Alternative Fashion Week #highendreadytowear #blackgirlmagic #mydesignerlife #wolfandbadger #boutiquefashion #vougemagazine #vougemagazineareyouwatching #prettyinpink #vrimagine #cocktaildresses #browngirlsrock #highendmodels #fabukmagazine #nord #rarediseaseawareness #myastheniagravis #notlettingmyrarediseasewin #whenyouseeit

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our_invincible_ollie

I have a couple of airway disorders that make me even more rare! They are called bronchomalacia and laryngomalacia. The jist of those long words are that areas of my lung/larynx/bronchioles are very floppy and not very strong. I have to see a special doctor who prescribes lots of medicines to keep me healthy. Sometimes I have a hard time breathing, i have a coughing fit, or I even forget to breath and my airway closes- that’s not a good thing, but my mommy and daddy know what to do! They have been trained to keep an eye on my lungs and airway! I’m so proud to be rare because that means I get to tell my story to everyone I meet! I am Invincible Ollie!!! #ourinvincibleollie #lightblueforlm #airwaydisordersday #airwaydefectsday #laryngomalacia #bronchomalacia #floppyairway #FightTough #ilovesomeonerare #curerarekids #tinyhero #littlestwarrior #neutropeniawarrior #rarediseaseawareness #thinkzebras

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officialmrds

“Use your job (skill) to do some real good" , Keisha Petrus, #nffighter .. #rarevolunteer Sharminie spends one weekend to photograph at #mrdsagm2018. A public health masters graduate at the #universityofmalaya, she also works at an NGO with focus on animal genetics and zoonotics. . #rareyouth #rarediseaseawareness #itsthelittlethings #thankyou

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everyonesfavoritebetch

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curefa_org

“FA is part of me, not all of me. There is so much more to all of us with any disability!” 💖 Meet Denise Lenhart 🙋‍♀️ in this week’s #MeetTheCommunity interview series on the Ambassador Program blog. She enjoys spending time with her family and taking care of her three fur babies. 👱‍♀️🐱🐱🐱 🥋 CUREFA.ORG/MEET-THE-COMMUNITY 🥋

1

mrbertiebrown

FLOOF APPRECIATION POST 💕 You see my Floof has a rare complex disease called Immune-Mediated Hemolytic Anemia or IMHA for short. This means Floof's body targets her own red blood cells. Whilst Floof is well today she can become critically ill at any stage. I hope this post helps raise awareness for those doggo's and their families out there who are fighting rare diseases. You are all an inspiration🙏 I love my Floof everyday and I am so proud that she fights hard to stay here with me and my family 💕 and though we aren't sure for how long I appreciate everyday I have with her 🐶🧡 #appreciationpost #floof #rarediseaseawareness #imha #keepfighting #strongdoggo #love #cute #japanesespitzinstagram #japanesespitz #floofer #whitewolf #dogstagram #dogsofinstagram #instacute #doggo #cutedogs #raiseawareness #raredisease #instadogs #instapet #dogsofig #dogs #fluffy #fluffydog

12

genuine_drafts

0

harley_quinn_cosplay187

1

brittany.marie8

It’s been a busy but amazing past few days in Atlanta for the NPKUA conference. I’ve been going to this conference since I was young, but as a patient. This biannual conference was one of the reasons I decided to go back to school and pursue a career in genetics. My name tag has changed a bit throughout the years, since I’m now able to attend as a healthcare provider and speaker for the conference as well. This year was a bit more emotional for me than I expected, since a lot has changed since the last conference. Although the end of it is a little bittersweet, I am so thankful for this PKU community and excited for what is ahead ❤️

11

abeautifulmindnpo

“Collaborating with an extraordinary cause for rare diseases and rare heights - watch this space for an exciting video launching soon and go follow A Beautiful mind on facebook to see more on the Arts Fair for 2018” - @abeautifulmindnpo . . . @_nicolecapper @nicolebraycapper @nandinakoster @mrs_south_africa @michellesmith007 . . #rare #rarediseaseawareness #brain #braininjury #braininjuryawareness #braininjurysurvivor #rareheights #specialneeds #specialneedschild #seizures #brain #npo #epilepsy #kid #family #child #socialimpact #givingback #philanthropy #payitforward #helpothers #causes #lifechanging #abeautifulmind

0

tripawd.princess

0

mz_cheez

If you are ever feeling like something isn’t right with your body, don’t allow anyone to tell you that you are ok until they have checked every possible outcome. #raredisease #rarediseaseawareness #thereISaSOLUTION

7

jacks_butterflies_australia

1

alexianortonjones

Love someone rare 😍❤️ #RareDiseaseAwareness 🕊

0

more.than.midodrine

I finally did it! I’ve been wanting to cut my hair, and had a sudden burst of determination and went for it. 😂

34

pink_sprinkles90

0

burningcarthage

New things on the surgery front! So, I made it roughly 5 weeks after my last surgery in May before I began to have voice, swallowing, and slight breathing issues. I've been using my false cords for about 2 weeks because my actual voice was pretty much gone. This is definitely a very short period of time for me (as an adult) to show sufficient tumor regrowth. Usually, I can go a couple of months before the eventual descent to needing surgery begins. 💥 It's not easy to talk about, but after a lot of contemplation and weighing pros and cons, yesterday I started injections of cidofovir into my vocal cords. 💥 Cidofovir is a medicine typically used to treat cancer patients as a form of chemotherapy, and it's also used to treat AIDs patients. There's side effects ranging from barely noticeable to potentially life threatening....but it could possibly slow down the growth of my tumors, which would mean my surgeries could be spaced apart for longer than less than 2 or 3 months! 💥 I have another surgery and injection round in 3 weeks, and then another hospital date scheduled for mid-August. It's not going to be the easiest of months but I'm determined to see if cidofovir can help me. 💥 So far, the only side effect I've had has been a massive headache that seemed to come out of nowhere when I was getting ready to leave the hospital yesterday. 💥 I know some people won't agree, but I can't stress how important the HPV vaccine is, especially for young ones. Had the vaccine been around when my mom was a child, I would not have contracted RRP because her immune system, in turn, would have prevented mine from being susceptible to HPV infection. Instead, I've had literally hundreds of surgeries since I was a toddler to try and keep my airway functioning, and at 30 years old I'm desperate enough to try what is essentially a chemo drug to get some relief from the HPV cells always replicating themselves. Vaccination is so, so important. I would never want my child to face what I have had to face. RRP *is* preventable with the HPV vaccine. There's hope for the next generation!

24

hollylaweona

1

itsdustybones

Found this adorable little fluffy pastel blue zippered handbag, and soft zebra print pillow at Goodwill! 😍 I'm using the bag to store my stim toys from now on, because it's just the right size and is a stim toy of sorts itself since it's so soft! 😀 I could touch it all day! 😂 Bag was $3.99, cushion was $4.99! #autism #autistic #autismacceptance #aspergers #aspie #ASD #SPD #mentalillness #zebrastrong #chronicillness #EDS #ehlersdanlossyndrome #rarediseaseawareness #handbag #bags #cute #fashion #shopping #goodwill #thrifting #stimtoys #stimtoy

0

brittany.marie8

Just a few of the many pictures from the welcome party of cocktails in the garden for the first night in Atlanta. One day down, and already learning a lot. I always look forward to this conference ❤️❤️ #npkua

1

jacks_butterflies_australia

Celebrating #worldchocolateday picking up fruchocs and choc honeycombs from Robern Menz ready for tomorrow night's movie night. Our JBs reusable goodie bag contains JB's Reusable Bag JB's Drink Bottle JB's Pen Packet of FruChocs from Robern Menz Packet of Mini Choc Honeycomb from Robern Menz Our JBs goodie bags are available at the cost of $20 each. $5 from the sale of each bag goes to Jack's Butterflies. #raredisease #rarediseases #rarediseaseawareness #rareaware #rarefamilies #careaboutrare #nonprofit #nonprofitcharity #childrenscharity #Adelaide #southaustralia #adelaidefundraiser #movienight #JurassicWorld #JurassicWorldFallenKingdom #dinosaurs #moviefundraiser #moviegoer #robernmenz #fruchocs #ichoosesa #goodiebag

1

nicolejlove

Today, was day one of the National Bardet-Biedl Syndrome conference. I feel so overwhelmed & inspired by all of the information I've received today. There were so many amazing researchers & speakers including my sweet friend @fairkaren. We are so blessed to have all of these resources and modern medicine that we have today. There is so much hope! #bardetbiedlsyndrome #bbsstrong #bardetbiedlsyndromeconfrence2018 #hope #love #friendship #family #rarediseaseawareness #raredisease

5

ivannarosa

4 years ago, before we had the whole exome sequencing done to get an accurate diagnosis, we were told Adam may have cerebral palsy. They said they didn't know if Adam would be able to walk. He started walking with a reverse walker a few months after that. A few months ago he finally started running. This week he started peddling after working on it for almost a year!! These milestones might not seem significant to a lot of people, but parents of children with disabilities know just how paramount the "little" things are. I would cringe when his past therapists would tell him "don't run" because it took him so long to be able to do that. I even bawled my eyes out the first time he said "mine." I'll never forget those moments. Even though he is still considered nonverbal, he's able to show us exactly what he wants. He's clever and mischievous. He loves signing "hi" to kids and getting his whole class to dance when they should be at circle time. Little by little he's showing us what he's capable of 💙 #adamappreciationpost #becausehesawesome #raregeneticdisorderawareness #specialneedsmom #rarediseaseawareness

4

germexisoosie

0