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#ebawareness

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Good luck and thank you to our #virginlondonmarathon runners! James Collins and Barry Austin. #cureEB #ebawareness

This tattoo was one of the best gifts ever.

#AndreSoukMMA #Tatoo #EBAwareness #Motivation

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

Versão em português abaixo. **SHARE** 🇺🇸 Geovanna is such a beautiful baby. Look how cute she is all dressed up. She is another butterfly that deserves every chance for happiness. Your support makes a huge difference in our butterflies’ lives. Please donate now at: https://www.paypal.com/fundraiser/charity/112234

#EpidermolysisBullosa #EBawareness **COMPARTILHE** 🇧🇷 Geovanna é uma bebê linda! Olhem como ela está adorável toda arrumada. Ela é mais uma borboleta que merece todas as chances de uma vida feliz. Sua ajuda faz uma grande diferença na vida de nossas borboletinhas. Para saber como ajudar, envie um e-mail para sos@sosebkids.com.

#SOSEBkids #EpidermóliseBolhosa #divulgueEB

@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 is #EBAwareness and what a 3 Yr old with #EpidermolysisBullosa does at night. Takes off her protective bandages and wraps Damd you #EB #EBResearch why do we not have a cure for this yet!! !!!!!😡😡😡😡😡😡😡

WOW! Dominated his athletics carnival today... this morning I had to burst a few big blisters under his feet.. but it didn't stop him! Here is his results 🏅🏃🏻✊🏼 🏅• 1st in 9yr olds 100m 🥇
• 2nd in 9yr olds 200m 🥈
• 2nd in open boys 1500m 🥈
• 3rd in 9yr olds 800m 🥉
• 4th in open boys Relay 🏅
& qualified to represent his school in the zone athletics carnival. Proud of you @jaydenjohnbrown #eternallybrave #epidermolysisbullosa #ebawareness #strength #brave

MOST RECENT

Versão em português abaixo. **SHARE** 🇺🇸 Geovanna is such a beautiful baby. Look how cute she is all dressed up. She is another butterfly that deserves every chance for happiness. Your support makes a huge difference in our butterflies’ lives. Please donate now at: https://www.paypal.com/fundraiser/charity/112234

#EpidermolysisBullosa #EBawareness **COMPARTILHE** 🇧🇷 Geovanna é uma bebê linda! Olhem como ela está adorável toda arrumada. Ela é mais uma borboleta que merece todas as chances de uma vida feliz. Sua ajuda faz uma grande diferença na vida de nossas borboletinhas. Para saber como ajudar, envie um e-mail para sos@sosebkids.com.

#SOSEBkids #EpidermóliseBolhosa #divulgueEB

Sohana and people with #EB have painful blisters popped daily-how many water balloons can you pop in support? Take the hit for EB.
FILM "I am doing EBpop for the Sohana Research Fund to make the blisters stop. I challenge.... (3-5 friends) to do it 48 hrs!
TEXT to add to your post which you can copy and paste from here. "I am doing EBpop for the Sohana Research Fund to make the blisters stop. Text POP to 70300 to give £3 or visit www.sohanaresearchfund.org #EBpop #cureEB #EBawareness"
Get a friend to throw water balloons at you, fill a paddling pool with balloons and pop as many as you can in 10 secs, challenge a friend to a balloon popping race, or come up with your own creative way of taking on the challenge! Have fun and thank you!

Its a good feeling when you see your child feeling carefree from all of her daily struggles. #lovelife #behappy #itsraining #rain #daughter #freedom #carefree #shedeservesit #daily #ebawareness #ijustwantherhappy

**compartilhe** ** share** 🇺🇸Pretty in pink!! Our butterfly Daniela just received her Cubitan. This nutritional supplement is designed for the dietary management of patients with chronic wounds and thanks to your donations, she got a whole case of it. Your support makes a difference in our butterflies' lives! Please donate now: https://www.paypal.com/fundraiser/charity/112234 #EpidermolysisBullosa #EBawareness 🇧🇷Linda de cor de rosa! Nossa borboleta Daniela acaba de receber as garrafinhas de Cubitan. Esse suplemento nutricional é designado para pacientes que sofrem com machucados crônicos e, graças a suas doações, a Daniela recebeu uma caixa inteira. Para saber como ajudar, envie um e-mail para sos@sosebkids.com. #SOSEBkids #EpidermóliseBolhosa #divulgueEB

PLEASE CLICK THE LINK IN MY BIO

#eb #awareness #ebawareness #fightEB #debra #charity

Sohana and people with EB have painful blisters popped daily-how many water balloons can you pop in support? Take the hit for EB.
FILM "I am doing #EBpop for the Sohana Research Fund to make the blisters stop. I challenge.... (3-5 friends) to do it 48 hrs!
TEXT to add to your post which you can copy and paste from here. "I am doing EBpop for the Sohana Research Fund to make the blisters stop. Text POP to 70300 to give £3 or visit www.sohanaresearchfund.org #EBpop #cureEB #EBawareness
Get a friend to throw water balloons at you, fill a paddling pool with balloons and pop as many as you can in 10 secs. Challenge a friend to a balloon popping race. Have fun and thank you!

Photo in today's Post Star!! Thanks again to the Saratoga Springs Eagle Club, Herb Taylor, and Don Yanchunis for the $1,000 donation to The Big Ride for EB!!! LIKE us on Facebook
@The Big Ride for EB #KH #thebigrideforeb #ebawareness #whooo #needacure #divaship #cantwait #eb

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