We are celebrating #RareDiseaseDay by raising awareness in the pediatric rheumatology community, sharing stories from youth affected by rare disease, and highlighting the need to… Continue reading Cassie + Friends Society
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I am Syafiq from Malaysia and I am living with Hypohidrotic Ectodermal Dysplasia (HED). Â I love hiking in the jungle and jogging (which previously… Continue reading I am Syafiq
“I have Sickle Cell disease”. It is a phrase that had often led to a little backward movement when I said to a man, a… Continue reading My Sickled Life: From weakness to power.
Good afternoon, About Nedirim NPO, is a parent association that works to promote rights and raise public awareness regarding rare syndromes. Key actions for RDD:… Continue reading Nedirim, NPO
My name is Ryan, I am from the North East of England and I am a PFS (Post Finasteride Syndrome) sufferer. I first started taking… Continue reading Devestating effects of propecia
Hello everyone! My name is Tristan from the United States and I am living with Sickle cell anemia. My passion in life is fashion, design, and… Continue reading I am Tristan
                          … Continue reading Living with MCTD: A phoenix attempt
My story is one that is considered “unusual” by most, however, many people suffer from the same inequalities I have faced over my lifetime. My… Continue reading Expendable
6 continents, 6 portraits, 6 heroes, 6 lives. Rare Disease Day shines a light on the global and diverse community of over 300 million people… Continue reading Meet our heroes!