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Managing EB often goes far beyond skincare alone. Daily routines, nutrition support, pain management, wound care, and preventing complications can all become part of life with epidermolysis bullosa. 💙
While every experience is different, raising awareness about the realities of treatment and ongoing care can help foster more understanding and support for the EB community.
If you're interested in sharing your story with Epidermolysis Bullosa, click here: bit.ly/4dV7gru
#Eb #EpidermolysisBullosa #epidermolysisbullosaawareness #raredisease #shareyourstory #PatientWorthy
🩵💚May 17th is Neurofibromatosis Awareness Day!
Neurofibromatosis (NF) refers to a group of genetic conditions that cause tumors to grow in the brain, spine, and on nerves throughout the body.
NF includes neurofibromatosis type 1 (NF1) and all types of schwannomatosis (SWN), including NF2-related schwannomatosis (NF2-SWN). NF impacts everyone differently and may lead to blindness, deafness, bone abnormalities, disfigurement, learning challenges, disabling pain, or cancer.
About half of people with NF inherit the condition from one of their parents. The other half develops NF due to a spontaneous change in the gene. There is no cure for NF1 or SWN, but treatments are available to help manage symptoms and address other conditions that may develop.
On May 17th, wear blue and green in honor of those living with and affected by NF, and share your story with us to help spread awareness about this rare condition. Every action helps build progress for the NF community!
Share your story here: bit.ly/4dV7gru
#Neurofibromatosis #NFAwarenessDay #NF1 #NF2 #PatientWorthy
Sources: Children's Tumor Foundation & NIH
🧠 International Oligodendroglioma Day 🧠
Today we raise awareness for oligodendroglioma, a rare type of brain tumor, and stand with the patients, caregivers, and families navigating its impact every day.
By sharing stories, supporting research, and spreading understanding, we help shine a light on a condition that deserves greater visibility and compassion.
Together, we can amplify voices, foster connection, and support hope within the brain tumor community.
#internationaloligodendrogliomaday #oligodendroglioma #BrainTumorAwareness #rarediseaseawareness #PatientWorthy #shareyourstory
