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MarbleRoad Blog

English - Rare Disease, Public Health, Volunteerism
http://marbleroad.wordpress.com
MarbleRoad Blog · 1M ago

Hope for Harlow

URGENT :: 6-month old Harlow needs your help; she has alpha-1 antitrypsin deficiency and needs a liver transplant. Read this post for more information about how YOU can help.
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MarbleRoad Blog · 1M ago

Hope for Harlow

URGENT :: 6-month old Harlow needs your help; she has alpha-1 antitrypsin deficiency and needs a liver transplant. Read this post for more information about how YOU can help.
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MarbleRoad Blog · 2M ago

Taking a LEAP into the Dunes

Reblogged from Listen Local First: Performing for a cause is different than the average concert; there’s a certain appeal philanthropy brings to a musical experience. Musicians can’t be stereotyped as self-promotional or egoistical; instead, they’re lending their voices as a catalyst for change, cre
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MarbleRoad Blog · 3M ago

Press Release // LEAP Sessions on Rare Disease Day

Take a LEAP for Complex Illness on Rare Disease Day 2012 // Come out and join us for a benefit concert - to benefit the work of MarbleRoad, a 501c3 non-profit: connecting people who have complex illnesses with the resources they need to help them improve their lives.
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MarbleRoad Blog · 3M ago

CAPS / Rare Disease Day 2012

As millions of Americans observe National Rare Disease Day this month, we share a compelling story of one patient’s lifelong struggle with a very rare disease. Texas resident, Dave Crawford, is sharing his family’s experience with media nationwide to raise awareness of the many challenges faced by p
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MarbleRoad Blog · 3M ago

Rare Disease Activities at Sanford Research

A guest blog post by Liz Donohue of CoRDS: The Coordination of Rare Diseases at Sanford (CoRDS) registry is a national disease registry that includes all rare diseases. The CoRDS registry is headquartered at Sanford Research in Sioux Falls, South Dakota and is supervised by Dr. David Pearce and Dr.
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MarbleRoad Blog · 3M ago

Blog Hop 2012 / Rare Disease Day Efforts

Blog Hop 2012 -- a program of the RARE Project to bring awareness to Word Rare Disease Day 2012. For Blog Hop 2012, MarbleRoad shares info about their IndieGoGo Campaign, a benefit concert, and the Rare Childrens Storybook Project. #1Mil4RARE
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MarbleRoad Blog · 7M ago

50/50 and Neurofibrosarcoma

50/50, a film starring Seth Rogen and Joseph Gordon-Levitt based on the true story of Will Reiser who is a survivor from a battle against a rare cancer of the spine. // The Children's Tumor Foundation seeks to improve the health and well being of individuals and families affected by the neurofibroma
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MarbleRoad Blog · 7M ago

The CLASS Act and Caregiver Village

The White House and the US Department of Health and Human Services pulled the plug on the Community Living Assistance Services and Supports Act, known as the “CLASS Act”. // Caregiver Village offers a creative and fun way to support caregivers.
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MarbleRoad Blog · 8M ago

The Yellow Bird Project (via Sarah Grothjan)

When someone asks me who I am or what I do, I typically default to any combination of journalist, student, writer, intern. I think these descriptions embody just about every person I currently attend college with at the E.W. Scripps School of Journalism. It's just the largest chunk of who we are at
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