Linseigh · @linseigh
132 followers · 340 posts · Server mastodon.socialIt’s #RareDiseaseMonth! Where are my #raredisease folks at?
#rarediseasemonth #raredisease #disability #chronicillness #disabled #spoonie #rare
LAG RLP · @lagrlp
12 followers · 14 posts · Server selbsthilfe.social
Hier ist der zweite Teil unseres Interviews mit dem Selbsthilfeverband Wir sind 22Q e.V. Diesmal geht es um die wichtigsten Pfeiler der Verbandsarbeit. Schaut rein: https://youtu.be/PPJufFFN2VI #StudioSelbsthilfe #22q11 #rarediseasemonth
#studioselbsthilfe #22q11 #rarediseasemonth
Inklop Bunny · @smartaspaint
16 followers · 23 posts · Server meow.social
I am 1 of 800 people worldwide diagnosed with FOP, aka Fibrodysplasia Ossificans Progressiva.
🔹Synonym: Myositis Ossificans Progressiva
🔹 A mutation of the ACVR1 gene, which helps the embryo & repairs the skeleton after birth
🔹No effective treatment
#RareDiseaseMonth #disabled #disability #ShowYourStripes
🎨 by pastel_teeth 💜
CW: medical/anatomical photos in thread
#showyourstripes #disability #disabled #rarediseasemonth
Seán Kelly MEP · @SeanKellyMEP
24 followers · 1191 posts · Server respublicae.eu
RT @IrishVasculitis: First of 3 visits yesterday to meet MEPs as part of Rare Disease Week. Thank you @SeanKellyMEP @eurordis #rarediseasemonth @rareireland #vasculitis @_ERNRITA @fairvasc #RAIN
🐦🔗: https://n.respublicae.eu/SeanKellyMEP/status/1623363436959629313
#rarediseasemonth #vasculitis #rain
Linseigh · @linseigh
130 followers · 332 posts · Server mastodon.social
It’s #RareDiseaseMonth!
This is my first year as a double rare patient — if I were a gemstone, I would be priceless ✨
Learn more about my story by watching this news feature: https://www.fox5atlanta.com/news/georgia-grad-student-defies-medical-expectations-25-years-after-devastating-diagnosis
Rare Disease Day
Yan Leyfman, MD · @yleyfman
86 followers · 41 posts · Server med-mastodon.com#medicine #meded #precisionmedicine #precisiononcology #precisionhealth #oncology #genetherapy #diagnostics #leader #womeninscience #womeninmedicine #womeninstem #globalleader #globalleadership #globalleaders #personalizedmedicine #rarediseaseday #rarediseases #raredisease #rarediseaseawareness #rarediseaseday2022 #rarediseaseresearch #rarediseasemonth #precisionvoice #precisionleader #womeninscience #sarcoma #immunology #immunotherapy #immunediagnostics #diagnostics #personalizedmedicine
#medicine #MedEd #precisionmedicine #PrecisionOncology #precisionhealth #oncology #genetherapy #diagnostics #leader #WomenInScience #WomenInMedicine #womeninstem #globalleader #globalleadership #globalleaders #PersonalizedMedicine #rarediseaseday #rarediseases #RareDisease #rarediseaseawareness #rarediseaseday2022 #rarediseaseresearch #rarediseasemonth #precisionvoice #precisionleader #sarcoma #immunology #Immunotherapy #immunediagnostics