#raredeseases

[dppspain]

#Repost @poradrian (@get_repost) ・・・ III TORNEO DE PÁDEL SOLIDARIO CONTRA DUCHENNE!!! 2483,60€!!!! Agradecimiento especial a nuestro patrocinador, por tercer año consecutivo, @fundlacaixa xa y a nuestros colaboradores: @bodycare_fitness, @redpisoparquedelasavenidas @elcorteingles @starviepadel @padellastablas y #Teletrofeo!! ! Y por supuestísimo no hay palabras para agradecer al organizador, Vicente, y a todos los jugadores y gente que se ha acercado para acompañarnos ese día. . . Como siempre todo lo recaudado está destinado en exclusiva a la investigación gestionada por @dppspain🙆‍♀️ . . #padel #torneosolidario #deportesolidario #distrofiamusculardeduchenne #raredeseases #duchennemusculardystrophy #dmd #enfermedadesRaras #desafioduchenne #endDMD #findcure #duchenne #resiliencia #todosSomosDuchenneYbecker #discapacidad #diversidad #familiaDiversa #distrofiaMuscular https://www.instagram.com/p/BxxXI_CijGW/?igshid=tuz7plkd8cg2

[dv869r]

WELCOME 🙏🏼 2020... 🎆A New year & a new decade has began. It’s not been easy and it’s not been fun... I hope 🤞 it was good to you and that this years even better... I have some hope’s, I have some dreams and I would like to share them with you...I know you’re busy, I know you’re late, I know it’s inconvenient, but could I get you to listen, could you possibly stay, have a coffee ☕️ or tea 🍵 or a drink 🥃 with me and listen or share...is it possible, do you think you’d care?! I know you’re a good person and everyone has a battle of their own to fight, a goal to achieve, a change and a better life...Everyone wants something, more is more and less is less, more is more stress...I’m not asking for a lot, I promise it doesn’t even have to cost!$ Sharing is caring and caring is nice 👍 So if you have a moment and you’re scrolling, take one ☝️ extra step in showing you care, leave me comment or maybe a like, but please just share, it’s ever so nice - free & easy & it helps - maybe have a quick read and maybe I can make you smile?! If I made a smile or smirk, a corner of the lip turn and curve...let me know your three wishes and leave me a heart in your favourite colour - Don’t be shy ☺️ say hi 👋 and if you’re truly special and read until the end - let me know by typing this word - DV8 - If you leave a comment and like, I might just have to pop over, so hang tight... I will be right over to like and care! 🙏🏼🥰😇 Thank you and happy new year, I hope 🤞 all is going super so far!? I sincerely appreciate all of you, no matter where, who, or why, what...new year, new things on the horizons! Links if you’d like to learn more and help I will be updating but for business or sponsorship opportunities please email 📧 me @ dv869r@gmail.com - you can follow me on all social media platforms @DV869R - and for info & more you can check out - http://gofundme.com/join-the-fight-for-marias-life ���️ Also on YouTube @ Marija- DV869R #share #healthandwellness #raredesease #dv869r #tag #share #like #comment #follow #bekind #positivity #blog #nice #caring #community #neeyear2020 #fun #poem #ryme #cute #sweet #helpothers #DV8ForLife #YouTube #Twitter #Facebook #tiktok #cominingsoon https://www.instagram.com/p/B66AjnEHc1F/?igshid=15wpoc4gln8je

[katemexxi]

@Regrann from @madriles75 - @Regrann from @poradrian - El 7 de septiembre se celebra el día mundial de concienciación sobre la Distrofia Muscular de Duchenne. Es una enfermedad neuromuscular considerada poco frecuente, afecta a uno de cada 3500 niños, casi todo varones. Por una mutación genetica el cuerpo no produce distrofina, la responsable de mantener los músculos sanos. Poco a poco la musculatura se va degenerando. Los niños pequeños tienen dificultades en seguirles el ritmo a sus compañeros hasta que se ven obligados a usar silla de ruedas, aparecen problemas cardíacos y respiratorios. La esperanza de vida se ve notablemente reducida. Un abrazo, un gesto tan cotidiano para millones de madres, se vuelve un sueño imposible de alcanzar... Ayúdanos a cambiarlo!!! Queremos llenar las redes de globos rojos!!! Comparte esta imagen en tu cuenta de instagram o en otras redes sociales y únete al #desafioDuchenne. Haz que la enfermedad de nuestros hijos sea visible. Luchemos juntos por un futuro mejor!!! Puedes encontrar más información en @dppspain. Gracias💜💜💜 . . . #unete #actua #raraPeroNoInvisible #awareness #septiembre #september #siete #7 #duchenneAwarenessDay #difusion #distrofiamusculardeduchenne #duchennemusculardystrophy #dmd #enfermedadesRaras #raredeseases #desafioduchenne #endDMD #findcure #duchenne #todosSomosDuchenneYbecker #discapacidad #diversidad #familiaDiversa #distrofiaMuscular #resiliencia - #regrann - #regrann

[seloseppitelodissi]

#chronicillness #raredeseases #chronicpain #misdiagnosed #lipedemafighter #lipedemasisters #lipoedemafighter #lipoedemaladies #lipedema #lipoedema #thyroiddisease #inflammatorydiseases #hormonalconditions #mentalhealthawareness

[lepetitriot]

Caras vemos, dolores no sabemos... #dolorcronico #chronocpain #EDS #dolorneuropatico #spooniehumor #spoonie #zebra #cebra #spooniecommunity #fibromialgia #fibro #encefalomielitismialgica #lupus #miasteniagravis #multiplesclerosis #esclerosismultiple #sindromedesjogren #sindromedeehlersdanlos #EhlersDanlossyndrome #lyme #artritisreumatoide #colitisulcerosa #invisibledisability #discapacidadesinvisibles #enfermedadesautoimnunes #enfermedadesraras #raredesease https://www.instagram.com/p/B1dM_jbgz8_/?igshid=fuk1n9dp434i

[theswitchproject]

This presentation addressed core issues in the challenge of evaluating technologies that treat rare diseases. It draws together information about current econom

[dppspain]

#Repost @poradrian (@get_repost) ・・・ 400 gracias a los alumnos y empleados del IES Enric Valor de El Campello!!! Por tercer año consecutivo van llenando la hucha durante el curso escolar para sumar casi 400€!!! Grandes los niños, el profesorado, las técnicos y lxs demás empleadxs🙆‍♀️🙆‍♀️ Por Adrián y por Marcos, un alumno con DMD, y por todos los niños con Duchenne!!! . . Como siempre lo recaudado será invertido en investigación de la enfermedad a través de @dppspain. . . Si tienes un negocio abierto al público y te apetece poner una hucha en el mostrador, no dudes en contactarnos!!! . . #distrofiamusculardeduchenne #duchennemusculardystrophy #dmd #enfermedadesRaras #raredeseases #desafioduchenne #endDMD #findcure #duchenne #resiliencia #todosSomosDuchenneYbecker #discapacidad #diversidad #familiaDiversa #distrofiaMuscular https://www.instagram.com/p/Bxxaviaitvw/?igshid=1g9n9bofqcw6y

[dv869r]

View this post on Instagram

A post shared by Marija Cairns (@dv869r)

Well it’s been long awaited - it seems although 17-18-19 were just a hop, skip & a jump to 2020... I’ve got to admit it’s been a long but at the same time fast four years, and a lot has happened! It can be very difficult to share your inner most personal feelings and thoughts, especially with strangers. I would be lying if I said judgment didn’t bother me - I think it effects all of us and we tend to get used to it to varying degrees - but I must say this time around I’m a little more apprehensive than I’ve ever been in my whole entire life... I could really use some words of wisdom if you have any to offer - leave them in the comments below if there’s anything that you can think of to help people get over their fears of judgment or fears of being - for a lack of a better word right now - maybe ‘bullied’?! I don’t know if that’s the right way to phrase it but my brain 🧠 isn’t cooperating with me right now! But I think you can get what I’m trying to say... I hope at least!? Well - the year has began and I for one am excited, scared, nervous, apprehensive, worried, but yet hopeful I think... Welcome to 2020 everyone - buckle up, settle in, and let the show begin! You can find me on most social media platforms @DV869R & on YouTube @Marija - DV869R 📲 For business or other related information requires or inquiries you can email 📧 me @dv869r@gmail.com Otherwise you can DM me with any questions, personal comments, or concerns, ect... Don’t forget to like comment share and subscribe - it’s free quick and easy, and it really helps! #free #share #story #realstory #raredesease #medical #physical #phycological #bullies #reality #socialmedia #influencers #selfesteem #instagram #post #new #follow #share #youtube #me #family #friends #2020 #newyear #hope #happiness #blog #online #sponsorme #creative https://www.instagram.com/p/B61bvJdnGsq/?igshid=d9pum8yt2fs0