Liste des hashtags les plus populaires par sujet #SHOWYOURRARE2019

This month is PTEN Awareness month!! #ptenawarenessmth @ptenitalia @ptenfoundation "The PTEN hamartoma tumor syndrome (PHTS) is a spectrum of disorders caused by mutations of the PTEN tumor suppressor gene. " I will try to share my story so far with this syndrome. I was born with a vascular anomaly named arterio-veinous Malformation on the forehead . Fortunately, I was able to have surgery when I was 11. "Arteriovenous malformation is an abnormal connection between arteries and veins, bypassing the capillary system. This vascular anomaly is widely known because of its occurrence in the central nervous system(usually cerebral AVM), but can appear in any location. Although many AVMs are asymptomatic, they can cause intense pain or bleeding or lead to other serious medical problems." (Wikipedia) #pten #cowdensyndrome #ptensyndrome #MayPten #phts #raredisease #arteriovenousmalformation #showyourrare #iamrare #showyourrare2019

5 days post op and he is back at football this morning. Not my choice in kit, I grew up wearing a Liverpool one. Can’t believe how well his recovery from the tonsillectomy has been. On Thursday it was rare disease day and every day I’m thankful that Thomas’s inherited metabolic disorder “MCADD” was picked up on the new born screening test at 5 days old was done. Things could have been a lot different. You change as a person when you have a child with a life threatening disorder. My family and my friends have helped me cope and be strong for our boy but Thomas is the strong one he is our ROCK who keeps his Dad and Me on our toes, keeps our love alive and our little family together. Having a child isn’t easy and it’s even harder when they have extra needs. Shout out to all the families who struggle and just get on with things. Your doing a great job! #mcadd #metabolicsupportuk #newbornscreening #newbornscreeningsaveslives #heelpricktest #rarediseaseday #showyourrare2019 #manchesterunited #football #footytotz #saturdaymornings #strong #love #family #recovery #tonsillectomy #happy #smiles #instamum #addidas

Me, myself & I. Ens viikolla vietetään kansainvälistä harvinaisten päivää, johan mieki olen tuohon joukkoon kuulunu suurimman osan elostani. Onneksi ollaan erilaisia ja silti kaikki yhtä arvokkaita #harvinaiset #showyourrare #showyourrare2019 #baldandbold #alopeciaawareness

JOURNEE INTERNATIONALE DES MALADIES RARES Karen Aiach s'est lancée dans un combat en 2009, celui de sauver sa fille atteinte de la maladie de Sanfilippo, une maladie génétique rare. Témoignage ⬇ #santef5 #showyourrare #showyourrare2019 #maladiesrares #health #picoftheday #igers #genetics

28 de febrero - dia mundial de las #enfermedadesraras Hoy más que nunca orgullosa de colaborar con el proyecto Smart4Fabry! Píntate la cara para mostrar tu apoyo al colectivo de las enfermedades raras! Es esencial dar a conocer las enfermedades minoritarias para aumentar el apoyo a su investigación y desarrollo de terapias eficaces . . . . #ShowYourRare #ShowYourRare2019 #enfermedadesminoritarias #raredisease #fabrydisease #vhir #phd #phdlife #lovescience #science #therapy #biomedicine #investigation #28defebrero

Rare Disease Day 2019 -The theme is 'Bridging health and social care'. Focusing on bridging the gaps in the coordination between medical, social and support services in order to tackle the challenges that people living with a rare disease and their families around the world face every day. Rare Disease Day 2019 is an opportunity to be part of a global call on policy makers, healthcare professionals, and care services to better coordinate all aspects of care for people living with a rare disease. (https://www.rarediseaseday.org/article/about-rare-disease-day) - feel free to share/repost #rarediseaseday #showyourrare #showyourrare2019 #showyourrareshowyoucare #yourachingart #myalgicencephalomyelitis #meawareness #chronicillness #chronicillnessawareness #chronicillnesswarrior #chronicpain #chronicpainwarrior #chronicfatiguesyndrome #chronicfatigue #cfs #cfsawareness #chronicmigraines #anxiety #depression #invisibledisability #spoonie #spoonielife #art #illustration #digitalart #chronicillnessartist

#raredisease #rarediseaseday #showyourrare #showyourrare2019 #međunarodnidanrijetkihbolesti #rijetkebolesti #danružičastihmajica #danružičastihmajica2019 #zdravlje #ljubav #nasiljeprestajeovdje #stoptheviolence #stopviolence #health #love #onelove❤ #bodypainting #tribe #tribepainting #smile #yogasmile #life #blessings

'Stylish 60's Day' saw Poppy dressing up at school, doesn't she look just gorgeous? She needs to have blisters pricked and dressings changed every day. The battle for normality is a constant one. She would love to be free from the pain of #EB. We want to help that happen and you can help us #CureEB too. Donate and help us raise EB awareness this #RareDiseaseDay #showyourrare2019

Da er første tattis i boks #spinabifidalife #spinabifidastrong #kunstmedpuls #tatovering #tattoo #acdc #gamlebyen #showyourrare2019