Filters

From Chiari to POTS to Lyme

Our odyssey with rare diseases began in November 2014 when my then 14 year old, intelligent, and athletic son, Jaden, was diagnosed with Chiari Malformation.… Continue reading From Chiari to POTS to Lyme

Read full story

Cowdens Syndrome

I am a 47 year old man from the USA in the state of KY I have something called Cowdens syndrome. It is a condition… Continue reading Cowdens Syndrome

Read full story

Berkeley California United States

Recently my 11 year old son has been diagnosed with dystonia our life has changed overnight I am new to this disorder and I’m trying… Continue reading Berkeley California United States

Read full story

Bundesliga-krank

Hallo, wir sind Michael & Nicole. Wir sind beide 38 Jahre alt. Über 12 Jahre miteinander verheiratet, Eltern einer Tochter, Mein Mann Michael ist krankheitsbedingt… Continue reading Bundesliga-krank

Read full story

Rare with no name, but it falls under a Movement Disorder

~Hi, my name is Wanda McCune, & my son Dylan Sharp, who was diagnosed in November of 2015 with a Rare Neurological Movement Disorder at… Continue reading Rare with no name, but it falls under a Movement Disorder

Read full story

My blog about living with a rare disease

My name is Kevin Carpenter and I’ve been living with Von Hippel-Lindau Disease my entire life. This time last year I was recovering from brain… Continue reading My blog about living with a rare disease

Read full story

Sharing my Voice!

I am living with Multiple Endocrine Neoplasia 2a. It’s a rare genetic disorder that I was born with. It causes Medullary Thyroid Cancer, which has… Continue reading Sharing my Voice!

Read full story

Rare Pregnancy Cancer, Choriocarcinoma

In 2014, I was diagnosed with gestational trophoblastic neoplasia disease aka molar pregnancy and it’s placental cancer choriocarcinoma. My daughter is also a survivor as… Continue reading Rare Pregnancy Cancer, Choriocarcinoma

Read full story

Dubin-Johnson Syndrome

When my son was born in 1994, he had some mild jaundice and they said it was nothing to worry about and possible was due… Continue reading Dubin-Johnson Syndrome

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!