Tags » Rare Disease

RARE Patient Advocacy Summit Details and Invitation

We would like to invite you and your community to join us for our fourth annual RARE Patient Advocacy Summit September 24 – 25, 2015 in Huntington Beach, California!  360 more words

Rare Diseases

What now?

So I have the diagnosis. I have the pain medication, I have the management tips. What now? A chronic illness is called chronic for a reason. 588 more words


Don't forget...

Today’s appointment wasn’t too bad, if I’d thought better about it I would have known today wasn’t going to be all that major.  But, still.  … 341 more words

Rare Disease

Face the music

Sometimes, I don’t care for Cowden Syndrome.  I don’t care to face all the organ stuff that comes with it, you know?  Well, actually…I never… 141 more words

Rare Disease

Channeling Pride

I ended up in San Francisco yesterday for the first night of the American Library Association Annual Conference, listening to everyone buzzing about the SCOTUS decision and their plans for the weekend. 215 more words

2015 Tribute to Champions of Hope Community

It’s that time of year again, when the rare disease community looks amongst themselves to identify and nominate agents of change, agents of innovation, and individuals who are working tirelessly on behalf of those affected by one of the 7,000 rare diseases impacting over 350 million people worldwide. 121 more words

Rare Diseases

Get Inspired by CRUTCH

Kids need to be empowered when faced with life’s challenges. They need to feel validated, understood and have a sense of control over their situation. 304 more words

Child Life