50/50 and Neurofibrosarcoma

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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 neurofibromatoses (NF).

The CLASS Act and Caregiver Village

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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.

The Yellow Bird Project for #RareDisease / @MarbleRoad @YBP by @SarahGrothjan

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When someone asks me who I am or what I do, I typically default to any combination of journalist, student, writer, intern. However, there is one other title I have earned yet very rarely attach to my name: rare disease patient.

NeuroDetour: A Conversation with Melanie Miller

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The Flammable Heart Exhibition is coming up Aug 7-13 for National Health Center Week. This post is a brief but candid look at the world of complex illness, and how MarbleRoad is trying to find creative ways to help people in need.

The Flammable Heart Exhibition

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The Charles August Long Undiagnosed Diseases Act of 2011; the battle to save community health center funding and keep Medicaid intact; The Walking Gallery; and The Flammable Heart Exhibition.

Rare Disease Day 2011: Research, Action and Impact

Updates from MarbleRoad for Rare Disease Day 2011, including events, publications, and a quick shout-out for those fighting rare kidney disease.

Statement from Howard Liebers on Proposed Budget Cuts For Rare Diseases

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A statement from Howard Liebers on the House Appropriations Committee’s proposed budget cuts, particularly its impact on community health centers, national service, health information technology, and rare disease.