#rarediseaseday2020

[dangerouslycleverdreamer]

Rare Disease day!!!! Another project plan and implement for marketing. to support this campaign please come over and have a picture with the super graphic and post it on instagram. #rarediseaseday From visual to paper from paper to realistic do not have much time to preparation and implement but still make it happen to support to make this campaign successful. Can see some artwork done by the kids and the teenagers and also some love from the parent who lost their child because of this . To understand more please visit ikea cheras for more details this station was place at link bridge between mytown and ikea restaurants #rarediseaseday #raredisease #rarediseaseawareness #rarediseaseday2020 #ikea #ikeacheras #ikeacherasmalaysia #ikeacherasshopper (at Mytown -IKEA Cheras) https://www.instagram.com/p/B9ZhiTUAZ4z/?igshid=fq2h44a6qnt2

[nanascorner]

I wear these stripes. Even though you can't see what I have, doesn't mean it's not there. Just because I don't use a cane or a walker doesn't mean I'm in pain. I get my flair ups but I keep going. I may lay up in bed at times, but I keep going. I may not wanna talk to you or spend time with you but that doesn't mean I'm not thinking about the people I care about. When you see me, I don't want sympathy or empathy. But for you to know that there are invisible rare diseases in this world. We are here but often ignored. There's no cure but we endure, I'm a Tarlov Cyster and so I wear these stripes. -Nyisha #rarediseaseday2020 #justanaveragegirl #iwearmystripes #wearyourstripes #tarlovcystdisease #invisibleillness #invisibledisease https://www.instagram.com/p/B9LHXEvp7YC/?igshid=zcw2x8yxmfbe

[seloseppitelodissi]

#ShowYourColors #RareDiseaseDay2020 #ShowYourRare #ShowYouCare #ShowYourSupport #RDD2020 #RareDisease #UndiagnosedDisease #MalattieRare #IMalatiInvisibili #OrfaniDiDiagnosi #ComitatoIMIOnlus #ComitatoIMalatiInvisibili #liolipedemaitalia #lipedema #lipoedema #lipedemaitalia #lipedemaitaly #lipedemanotmyfault #sovrappeso #obesità #obesity #overweight #lipedemaawareness @comitato_imi @liolipedemaitalia https://www.instagram.com/p/B9KstODo1rk/?igshid=14vvfu76iyrv4

[jinfit33]

Shout out to THOSE WHO HAVE #rarediseaseday2020 I am one in 100,000 people diagnosed with #granulomatosiswithpolyangiitis in a year and my age would make doctors look the other way. In 2015 I almost lost my life to a rare autoimmune disease. My body was attacking my healthy blood vessels destroying my lungs, kidneys, airways, my vision, my inner ear (balance) and my hearing. It took a very smart doctor who went above the consultant and sent me for a full body MRI after my bloods were coming back normal but my infection count was 269. With that MRI scan it showed shadows covering my lungs which was my body killing healthy blood vessel. I was in hospital for months coughing up blood, suffering with nose bleeds. I had lost my hearing in my right ear and my inner ear was shot I had no balance and couldn’t walk without falling down. I spent 3 years on heavy medication, chemo but with hard work and a healthy plan of exercise and eating well I am in remission and have just birthed twin girls. So today I celebrate being special, being apart of the most elite group of people who fight everyday for answers, to educate doctors and consultant in our conditions and to strive to provide advice and help to others that will follow our path in the journey of a better tomorrow. #wegenersgranulomatosis #wegenerswarrior #vasculitis #autoimmunedisease #rare #fitness #healthylifestyle #wellbeing #remission #personaltrainer https://www.instagram.com/p/B9KkKknghq1/?igshid=vymumlg0aoac

[thedisc0panda]

It’s #rarediseaseday2020 today! There are over 6000 rare diseases, and a lot of them are more common than you’d think, for example cystic fibrosis while being collectively common is still classified as a rare disease. Even within rare diseases there is another subset called “orphan diseases” no...they don’t only affect orphans. They are simply very very rare. Sometimes, as in my case something can be so rare that there isn’t an identified gene or name for it and so it’s labeled as another subset called “Undiagnosed” it usually takes patients up to 8 years to get at least one final diagnoses. As we progress with science we are learning to identify and learn more about these different diseases and discovering new ones all the time. Thanks to research initiatives we might be finally getting an answer as to what is the cause of my own rare disease, which is great as otherwise this type of genetic testing is extremely expensive ($280 thousand for four people or $70 thousand a person) so hooray for research! Go science!! (at Boston, Massachusetts) https://www.instagram.com/p/B9KQrzTjgHx/?igshid=13pmhrp5wqra7

[pmgawareness]

View this post on Instagram

Team PMG Awareness takes to the track on Rare Disease Day with its brand new race car! It’s definitely an attention getter! This car houses over 600 names of individuals who are affected by Polymicrogyria. Team PMGA has their eye in their 5th consecutive Western Endurance Racing Championship! We will be racing at Willow Springs, CA today, bringing awareness to Polymicrogyria and rare diseases in general! Stay tuned for more updates!! Go PMG!! #pmgawareness #rarediseaseday2020 (at Rancho Santa Margarita, California) https://www.instagram.com/p/B9J7EYOJhh8/?igshid=15o9mz4gacq91

[livinglifeswissstyle]

Today is also Rare Disease Day. There are over 300 million people worldwide living with a rare disease. Today is about raising awareness to support all those living with these illnesses every day. #i❤️shch #schaffyfamilies #livinglifeswissstyle🇨🇭 #rarediseaseday2020 https://www.instagram.com/p/B9JaVw1gLXQ/?igshid=1ipjdkntpcye7

[curekashop]

29th of February is rare, and dedicated for the rare! #rarediseaseday2020 #leapyear #support_the_rare #careforrare https://www.instagram.com/p/B9I1hKhp8qX/?igshid=u1jfzo21yxiu