Establishing Clinical Standards for a Rare Disease

Seeking treatment for a rare disease can be…

Costs of Caring for Children with Rare Disease – A Survey by Counsyl
Shivani B. Nazareth, RARE Blog contributor and a board-certified genetic counselor with Counsyl, Inc, is conducting an anonymous survey to… Continue Reading
World RARE Disease Day at National Institutes of Health
On February 29, 2012, the National Institutes of Health (NIH) will celebrate the fifth annual Rare Disease Day with a day-long celebration… Continue Reading
Submit Your Story to the Rare Children’s Storybook Project by January 13
Has your family submitted to the “Rare Children’s Storybook Project” yet? Your story could win up to $750 to help with medical costs.… Continue Reading
In A Parents Words – Why RARE Disease Needs ULTRA and FAST Act!
Roy and Reed Zeighami, couldn’t have articulated it better – why the RARE Disease community needs the ULTRA Act/Fast Act of 2012. Please… Continue Reading
Unlocking Lifesaving Treatments Act – ULTRA Act of 2012
In December 2011, U.S. Representatives Cliff Stearns (R-FL) and Ed Towns (D-NY), two senior members of the Energy and Commerce Committee,… Continue Reading
Are You a Blogger? Join our Blog Hop for RARE disease!
We are calling all bloggers to join us in a RARE disease focused blog hop on Monday, January 30th which will be 30 days before World RARE… Continue Reading
The Myelin Repair Foundation Aims to Eliminate The Valley of Death
What a great video. Watch to learn why $139 billion dollars invested into medical research only leads to 21 FDA approved drugs. The Myelin… Continue Reading

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