Filters

Complex regional pain syndrome and spinal cords stimulation

My name is Noemí, I am 27 years old and I live in Spain. I suffered from this disease since 2015, Complex Regional Pain Syndrome is… Continue reading Complex regional pain syndrome and spinal cords stimulation

Read full story

Living Rare

My name is Bridget, I’m 24 years old, and I have a rare bleeding disorder called Afibrinogenemia. This is a type of bleeding disorder in which… Continue reading Living Rare

Read full story

Living Rare

My name is Bridget, I’m 24 years old, and I have a rare bleeding disorder called Afibrinogenemia. This is a type of bleeding disorder in which… Continue reading Living Rare

Read full story

AN ENCOUNTER & COPING UP WITH A RARE CONDITION

AN ENCOUNTER & COPING UP WITH A RARE CONDITION                    by Rachit    This is written at a time when it’s as serious, an issue as… Continue reading AN ENCOUNTER & COPING UP WITH A RARE CONDITION

Read full story

AN ENCOUNTER & COPING UP WITH A RARE CONDITION

AN ENCOUNTER & COPING UP WITH A RARE CONDITION                    by Rachit    This is written at a time when it’s as serious, an issue as… Continue reading AN ENCOUNTER & COPING UP WITH A RARE CONDITION

Read full story

My Superficial Siderosis Diagnosis Story

  David M. Dickson Jr. has always enjoyed a zest for an active life. From neighborhood quarterback to surfing, fishing, weightlifting, and mountain biking this… Continue reading My Superficial Siderosis Diagnosis Story

Read full story

Growing Up Rare

Eleven years ago, the unspeakable happened.  After a particularly bad month of dealing with migraines, my neurologist decided it was time for an MRI.  My… Continue reading Growing Up Rare

Read full story

쇼그렌증후군, 척수병, 혈관염 등등 15살 때부터 17년동안 투병

안녕하세요! 저는 15살 때부터 쇼그렌증후군과 척수염 그리고 혈관염 등의 질환을 투병중입니다. 또한 저는 한국에서 살고 있고 신학대학교를 다니거 있습니다. 감리교신학대학교와 성결대학교를 다녔습니다다. 저는 어렸을 때… Continue reading 쇼그렌증후군, 척수병, 혈관염 등등 15살 때부터 17년동안 투병

Read full story

Jackson’s Journey

I’ve always been a worry wart when it came to my son, Jackson. Although I never wanted to find anything wrong with him, I always… Continue reading Jackson’s Journey

Read full story
What's your story?

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity!

Share your story

Share your colours

Join the community. Help us build awareness. Share your photos, videos and experiences!