“Support groups are such a good way of feeling like we are not alone. I have acromegaly and it took 15 years before they diagnosed it, which is about average,” said one Inspire member. People sometimes notice the slow onset of acromegaly, a condition in which the pituitary gland overproduces growth hormone, by comparing recent and past photos of a person. According to the Mayo Clinic, some of the first signs of disease are enlarged hands and feet, leading to trouble putting on rings or shoes, which gradually give way to changes in facial features, voice, and potentially serious medical complications like tumors. “I talked with several people from around the world that had this and learned so much from them…For those that can’t be cured,“ the Inspire member said, "these groups are a lifeline on how to deal with living with a rare disease on a daily basis.” Join Inspire today at http://www.inspire.com. #acromegaly #raredisease #OneMillionMatters

Janis Creedon, mother of 5-year-old boy with an ultra-rare undiagnosed disease, addresses the #RareDiseaseDay event today in Boston. #RareDiseaseSupport #raredisease (at Massachusetts State House)

Rare disease patient advocate Katie Brandt addresses crowd today at #RareDiseaseDay event in Boston. #raredisease #RareDiseaseSupport (at Massachusetts State House)

A rare disease compounds a person’s burden of illness with the complication that few in the professional, patient, or caregiver communities may be familiar with what is happening and what to do about it. Often, there are simply more questions than there are answers. “There are many forms of amyloidosis but they are not all treated the same,” said one Inspire member who cares for a husband with familial amyloidosis, a rare disease in which abnormal proteins cluster in tissues and organs, disrupting their function. Together, all types of amyloidosis affect fewer than 200,000 people in the US. Familial amyloidosis is so called because it is an inherited type of amyloidosis caused by a genetic mutation. “In some cases, [people] may go through chemotherapy, stem cell [therapy], or other treatments and go into remission if diagnosed early, but not for familial amyloidosis,” said one caregiver of a person with familial amyloidosis. “I feel you do have to advocate for yourself and also research for yourself just to understand what is going on and what can and cannot be done to help you. It is sometimes amusing when a doctor tries to tell you something he may feel you do not know and I just smile and say ‘yes, I read about that’…It helps to know that we are not alone and yes, we all would like to hear from those people who have the same disease so we may help each other.” Join us at http://rare.inspire.com. #raredisease #rarediseaseday #OneMillionMatters

At the #RareDiseaseDay event today at NIH, Jennie Lucca, CEO of The Children’s Inn at NIH, an Inspire partner, addresses the audience. #childhoodcancer #pediatriccancer #RareDisease

Patient advocate Shani Weber at the #RareDiseaseDay event held today at NIH. #ehlersdanlossyndrome #rddnih #EhlersDanlos #RareDiseaseSupport

We’re proud to be at the #RareDiseaseDay event at the NIH today. Over 275,000 of our one million members are affected by a rare disease. Learn more: rare.inspire.com. #RareDisease #OneMillionMatter #RareDiseaseSupport