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 neurofibromatoses (NF).

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.

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


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


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


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


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.