#ebawareness

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"Yook! I made a buttafwy!" 🦋 #butterflybaby #ebawareness #epidermolysisbullosa

This family (Leo not pictured) has my whole heart! It was the most special evening celebrating sweet Brady and raising some awareness for EB. I encourage all of you to the look into and consider becoming an advocate for this incredibly rare and unforgiving disease. #BelieveInBrady #BradyTheBrave #EBawareness #EBresearchpartnership

@eb_home
با عرض سلام و ادب
پروانه نازنینم، مهدی جان اهل لرستان در خانه ای بی پرونده تشکیل داده اند.
لباس مندرس اندوه بر قامت زیبای تو نمی آید
می بافم از عشق لباس گرمی را که
زین پس در قلب آرام تو حرفی از سرما نمی آید

دوستانتان را تگ کنید و آن ها را با این عزیزان پروانه ای و خانه ای بی آشنا کنید
@eb_home

آدرس خانه ای بی:تهران ، بزرگراه همت ، شرق به غرب، ورودی خیابان شیخ بهائی ، نبش برزیل غربی ، پلاک 164
دوست من
با مهرت به پرواز مهمان شان کن.. بانک سینا - شعبه ملاصدرا - کد 366 شماره حساب
۳۶۶-۸۱۶-۱۰۰۱۰۱۴۵-۱
شماره کارت
6393461023840974
شماره شبا
IR300590036681610010145001
به نام بنیاد امور بیماری های خاص(گروه حمایت از بیماران ای بی)
وبسایت و درگاه اینترنتی واریز کمک های مردم خیراندیش
www.eb-home.ir
واریز کمک از طریق کد دستوری موبایل
*767*6#
آسمان پرواز پروانه های مان باشیم ... درد جسمی پروانه ها درمان ندارد
اما درد فرهنگی شان، مهجور بودن شان، رفتار بد جامعه با آنها درمان دارد، بیایید جامعه ای آگاه تر برای پروانه ها
بسازیم
به ترحم نه بگوییم، پروانه ها به ترحم نیاز ندارند
کانون حمایت از بچه های پروانه ای
@ebchildrensupporters
کانون مرکزی
@iranianbutterflychildren

ایمیل: info@eb-home.ir
کانال تلگرام
telegram.me/eb_home
صفحه شخصی سید حمیدرضا هاشمی مسئول خانه ای بی
@seyedhamidrezahashemi
#ebawareness #epidermolysisbullosa #ebkids
#ebchilderen

This tattoo was one of the best gifts ever.

#AndreSoukMMA #Tatoo #EBAwareness #Motivation

Perspective.
Thanks so much @juliekentofficial for organizing such a special evening at @guggenheim for DEBRA. @wefighteb #EBAwareness #EpidermylosisBullosa

Dr claimed that he has Epidermolysis Bullosa. Our Father said , For I am the Lord , Who Heals You . Exodus 15:26. Grandma love ❤️ you so much mi amorcito#RareDiseaseDay #LukemathewEB #grandma#RareDiseaseDay #ebawareness
http://instagram.com/lukematheweb

https://www.youcaring.com/lukemathewcepedagarcia-721972

Our hearts are full of the feels today...well, more than usual anyway. Our hearts are always bursting because we're pretty sure we have the coolest KP community around! Go check out our Facebook page to see what is moving us today. #ebawareness #butterflybabies #kickeegivesback #actsofkindness

MOST RECENT

With a donation from "A Bike Named Maddie", (would love to know who is behind that) we are now over $4,000 raised for #ebawareness!! We can't thank everyone enough that has supported our efforts to this point. We only have 281 days left until the start of #thebigrideforeb

#cantwait #divaship #eb #epidermolysisbullosa #bikelife #whooooo

"Yook! I made a buttafwy!" 🦋 #butterflybaby #ebawareness #epidermolysisbullosa

Alisa loves reading. Her favourite place is her local library, where she can lose herself in tales of far away lands and beautiful princesses. Sometimes it's all that gets her through the painful, daily changing of her dressings. Read Alisa's story at www.debra.org.uk now. #FightEB #ebawareness #raredisease #epidermolysisbullosa #EB #debrauk

DEBRA závodníci - vždy s úsměvem na líci 😀🏃💪#debracz #barthrun #ebawareness #bezime #puchyrumnavzdory #running #smile #keepsmile

***SHARE***
Brazilian Feijoada: are you a feijoada lover? Do you love slow cooked, stewed beans with salty meats? Do you prefer a vegan/vegetarian option? We got them all. Come and join us join us for a wonderful traditional Brazilian lunch. All proceeds will be donated to the SOS EB Kids.
https://sosebkidscelebration.yapsody.com/…/brazilian-feijoa…
#SOSEBKids #EpidermolysisBullosa #EBawareness #charity #NYC

Esse convite para para aqueles que moram em NY ou no tri-state area: vamos comer feijão?? O Brasileiras de NY está promovendo uma deliciosa feijoada com o apoio do restaurante Beija-flor em prol do SOS EB Kids. Vai ter tudinho: feijão gostoso, arroz, couve, farofa e versão vegetariana. Será um momento especial para confraternização e celebração da vida! Vamos?
#EpidermóliseBolhosa #divulgueEB #feijoadabeneficiente
https://sosebkidscelebration.yapsody.com/…/brazilian-feijoa…

#socialgood #cause #volunteer #4change #giveback #dogood #eb #epidermolysisbullosa #raredisease #butterflychildren #nonprofit #charity #donate #fundraising #ebawereness #causethewave @debraofAmerica @eddievadder
#bradpitt

Are you a survivor? I am, having had cancer twice....but being a survivor doesn't just mean 'cancer'. A survivor is someone who encountered difficulty in life, and made it. I Googled the word 'survivor' to help me figure out what to write, and I got a Reality Show, so that was no use. I guess it's all about making it through a bad situation, picking up the pieces....and healing. We are all in a constant state of transformation, much like the butterfly.

#butterfly #survivor #healing #cleftproud #cancersupport

Inspirovali jsme se EB awareness campaign Debra International a vytvořili tyhle pichlavé cupcaky 😀🍮📌
Jak se vám líbí?
Přijďte si je prohlédnout zítra naživo na BARTH Day – 20. května 2017 nebo na Brněnská muzejní noc v budově Jihomoravský kraj - oficiální stránka
A nebojte se - bude i něco na zub a bez připínáčků 😋
#ebawareness #cupcake #debrainternational

Narodili se s nemocí, při které je bolestivý každý dotek. Přesto ve svém životě mají někoho, kdo je bezpodmínečně miluje, ctí a respektuje... Zveme na vernisáž výstavy Den za dnem, ruku v ruce.
20. května, ve 20 hodin, v Brně na Žerotinově nám. 3 - budova Krajského úřadu JMK.
Výstavu s námi zahájí i @libenarochova a hejtman JMK Bohumil Šimek.
Autorem fotografií je Jiří Langpaul.
#debracz #daybyday #handinhand #muzejninoc #jihomoravskykraj #ebawareness #epidermolysisbullosa #butterflychildren #love #family #respect

So this happened a few days ago!! A $1,000 donation to The Big Ride for EB. We could not be anymore thankful to Herb Taylor, Don Yanchunis, and the Eagles Club in Saratoga Springs for this gift, and for helping us spread #ebawareness and helping families with #eb.
Of course some that know me, know there is a very meaningful back story involved with this donation. Please like and follow our Facebook page, https://www.facebook.com/TheBigRideforEB/, to read more about it. There will be a post to that page later today!
#ebawareness #epidermolysisbullosa #eb #needacure #whooooo #bikelife #divaship #thebigrideforeb #cantwait

Zítra k ranní kávě ☕ doporučujeme Dobré ráno na ČT2. Hosty pořadu budou paní primářka Hana Bučková, odbornice na problematiku onemocnění EB neboli nemoci motýlích křídel a paní ředitelka DEBRA ČR Lucie Marková. @ceskatelevize #dobrerano #ebawareness #coffee #coffeetime #goodmorning #mug

Seemed like a good morning to take Leah to dip the toes in the sand at the beach. Only 287 days until The Big Ride for EB!!
#cantwait #eb #epidermolysisbullosa #ebawareness #whooooo #needacure #divaship #bikelife

Přípravy na Barth day... v sobotu v Pardubicich na závodišti ☺👍✂ #barthday #barthrun #proMotylky #ebawareness #debracz #tvorime #coztohobude

Versão em português abaixo. **Share**
🇺🇸 Guilherme is taking a quick break from playing to open a box full of essential supplies for his sensitive skin. Your support makes a huge difference in our butterflies’ lives. Please donate now at: https://www.paypal.com/fundraiser/charity/112234
#EpidermolysisBullosa #EBawareness **Compartilhe**
🇧🇷 Guilherme parou por um tempo de brincar para abrir uma caixa cheia de insumos essenciais para sua pele sensível. Sua ajuda faz uma grande diferença na vida das nossas borboletinhas. Para saber como ajudar, envie um e-mail para sos@sosebkids.com.
#SOSEBkids #EpidermóliseBolhosa #divulgueEB
#socialgood #cause #volunteer #4change #giveback #dogood #eb #epidermolysisbullosa #raredisease #butterflychildren #nonprofit #charity #donate #fundraising #ebawereness #causethewave @debraofAmerica @eddievadder
#bradpitt

Srdečně zveme na vernisáž výstavy o pacientech s nemocí motýlích křídel a jejich lidech. V sobotu 20. května 2017, ve 20 hodin v prostorách Krajského úřadu Jihomoravského kraje (Žerotínovo nám. 449/3, 601 82 Brno-střed) v rámci Brněnské muzejní noci.

Zahájení se zúčastní Bohumil Šimek - hejtman Jihomoravského kraje, ředitelka DEBRA ČR Lucie Marková a vzácným hostem bude módní návrhářka a dlouholetá podporovatelka organizace DEBRA ČR, Liběna Rochova.

Přijďte na besedu ve 20:30, 22:30 a 23:30 a seznamte se s osudy jednotlivých lidí s EB.
Výstava bude v prostorách Krajského úřadu JMK k vidění až do 30. 6. 2017.
@libenarochova #brno #ebawareness #debracz

Going to name the next new bike "lizard"! Seems like a great name for a cross country and BACK bike ride.
#eb #ebawareness #epidermolysisbullosa #needacure #divaship #whooooo #cantwait #bikelife

thank you to everyone at The Old Vicarage School in Derby for hosting a dog show for DEBRA! It looks like it was a fantastic day #FightEB #ebawareness #raredisease #EB #debrauk

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