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more.than.midodrine

first day of classes! ••• i am beyond excited to be back, even though i am only taking one class this semester. my health isn’t anywhere near i would have hoped, but i’m taking it one day at a time. #ichoosejoy

27

biomarinofficial

Isaac is one of the estimated 1100 people in the world living with MPS VI. Today we’re sharing part of Isaac’s story. What are his hobbies? Listen to find out! 🏓⛸ . . . #patientstories #mpsVI #BioMarin #healthcare #pharmaceutical #careaboutrare #mpsawareness #mps2019 #rarediseaseawareness

3

ash_libbie

Gotta remember why this goal is so important. We’re at the beginning of our IVF journey and have to play the waiting game before we get started. IVF for genetic reasons is a super complex process but Im happy I live during a time where it exists 🙌🏽 ⠀ 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 🌸 ⠀ 🌸 ⠀ 🌸 ⠀ #getfit #fitness #healthy #lifestyle #inspiration #instagood #goals #exercise #fitspo #fitfam #weightloss #gym #fitgirl #fitspiration #getfit #fitnessjourney #determination #progress #healthylifestyle #weightlossjourney #Fitfam #Bbcomchallengeseries #Bbcomwarriors #gritgrimeglory #FitFluential #Movenourishbelieve #ivfgoals #fertility #rarediseaseawareness⠀ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀

0

findyourrare

“To the family of a suffering loved one… As tough as it is to watch, the most you can do is be a hand to hold and a shoulder to cry on. Be a place of solace, a warm body of comfort when the world around them feels cold and hopeless. Whatever disease your loved one may be suffering from, whether it be mental or physical, we know you are suffering too. No one should ever suffer in silence, you included. Be open with your person about how his or her illness is affecting you. Let this person know that he or she is not in this alone, because after all, we are all in this fight together”. . . Rare disease affects everyone. RARE. is a safe place for everyone. RARE. is for the parent, the spouse, the sibling, the cousin, the friend, the colleague. Come together and join the fight because it takes a village. . . To read the rest of this blog entry👉🏻 subscribe to our newsletter at www.findyourrare.com 💌 RARE. 🚀1/29/19 . . #createwithrare #smallbusiness #supportlocal #shoplocal #shopsmall #familyowned #familyoperated #handmadewithlove #change #nord #findyourRARE #raredisease #rarediseaseday #rarediseaseawareness #facesofRARE #thisisRARE #greaterthan #bebrave #brandswithmeaning #bethechange #changestartshere #youareenough #youaregreaterthan #lifehappens #showyourrare #jointhemovement #handmade #invisibleillness

3

indonesiacareforrarediseases

Tahukah kau apa itu cinta tak bersyarat? Lihatlah ini, dan temukan makna cinta tak bersyarat 😍 . Anak berkebutuhan khusus (ABK) bersama orang tua yang luar biasa. Tak banyak yang mereka harapkan darimu, cukup dengan perlakuan yang penuh cinta dan penghargaan. . Jika kau bertemu dengan keluarga hebat seperti ini, jangan tatap mereka penuh iba. Jangan! Tapi sapa dan tersenyumlah penuh cinta 😊 #indonesiacareforrarediseases #ic4rd #ic4rdminiworkshop #rddic4rd2019 #specialneedsmoms #specialneedsmomlife #specialneedsdads #specialneedsfamily #specialneeds #anakberkebutuhankhusus #rarediseaseawareness #acceptance #unconditionallove #borndifferent #miraclebaby

2

brittany.marie8

I usually love visiting NYC, although being there this weekend instead of Gillette Stadium during Patriots playoffs was definitely tough. However, it was another amazing event doing what I love, and hearing that my talk is helpful to someone is all I needed to make it so worth it. To top it off, the pats won and I was still able to watch the entire game surrounded by other pats fans (even in the middle of NYC) 😄🏈 #everythingwegot

2

toughliketaylor

Link in the bio to the latest blog. It has been one year since we received Taylor's diagnosis....everything has changed, yet nothing has changed at all. We have learned so many valuable lessons since then.... . 1. Do Not Underestimate Others 2. Life Is Still Good 3. Some People Are Suffering 4. People Are Good 5. We Are Capable Of More Than We Believe . #diagnosis #raredisease #rarediseaseawareness #disability #purasyndrome #puraperfect #toughliketaylor #wearecapable #wearecapableofmorethanwebelieve #lifeisgood #peoplearegood #neverunderestimate #hopebig #dreambig #persevere #strength #determination #specialneeds #specialneedskids #momsofinstagram #momswhoblog #charlottenc #charlotte #inclusion #inclusionmatters #tough #warrior #perseverence #noexcuses

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rockenmamaof5

4

rarerthings

“Overcoming CRMO: what doesn’t kill you makes you stronger” profiles Maya, CRMO advocate. Link in bio to her inspiring story! #rarediseases #raredisease #rarediseaseday #rarediseaseawareness #crmo #crmoawarness #juvinilearthritis #arthritisfoundation #juvinilearthritisawareness

0

rare_and_invisible

FYI tomorrow there will be no post. . This weekend I've been with my wonderful boyfriend @matthew_s_wells and we went out to Guildford. We had a really nice day and went to creams again (of course). I was knackered when I got back though. There won't be a post tomorrow because I'm staying at my grandma's after dnd. . On Wednesday I am now going to be going to supportive care in hospital so they can try AGAIN to access my port... Which will be fun (not). I'm probably going to have a panic attack about that. If the needle bend again I don't know what I'm gonna do... . Hopefully this dumb port will be sorted soon though and it'll start being as great as everyone keeps trying to tell me ports are... . #myositis #myositisawareness #osteopenia #raynauds #hypermobility #raredisease #rarediseaseawareness #chronicillness #invisibleillness #invisibleillnessawareness #spoonie #chargie #chronicillnesswarrior #rareandinvisible #beseen #illness #port #creamscafe #creamsguildford #creamsresturant

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mrssaabhon

14

whits_life88

Wet hair don't care! #rarediseaseawareness

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ash_libbie

3

_chasingchickens_

First run of the year done. Was a really hard one for me and was so blessed to have @lindz_mcke1 who is such a dedicated and experienced runner, who so selflessly stayed by my side the entire run and pushed lots! So excited to run more for “Haileys Halo” - my rare activist fundraising account on given gain. Thank you to @rarediseasessa for all you do for those brave warriors fighting rare diseases. I hope that I can double my last years total raised of R35000.00! Proudly pushing my @thule_sa double glide stroller! For a link to my given gain account see my bio. #runforrare #haileyshalo #thule @thule @thule_sa @givengainfoundation #watchmommyrun #rarediseaseawareness #careforrare

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more.than.midodrine

anxious. relived. disappointed. questioning. these are all things i am feeling after being told that i will most likely be re-typed as ehlers danlos syndrome periventricular nodular heterotopia varient. ••• nothing is set in stone, and i still have a list of doctors i need to see before a concrete diagnosis is made. but, this was something that i wasn’t expecting. ••• thank you for having patience with me as we try to figure out what this means for my care!

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findyourrare

1

blugenesfdn


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