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.
NeuroDetour: A Conversation with Melanie Miller #FlameHeART
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.
Advocacy Update and 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
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.
Anti-ACA Litigation, Extenders Act and Rare Disease Day 2011
A legislative update on anti-ACA litigation, the Medicare and Medicaid Extenders Act of 2010, and Rare Disease Day 2011. Oh, and HAPPY HOLIDAYS!
Increased Patient Participarticipation in the Fight Against Rare Disease
The Institute of Medicine (IOM) issued a new report: “Rare Diseases and Orphan Products: Accelerating Research and Development” which calls for increased participarticipation by people with rare diseases.
MarbleRoad Launch and Fundraising Event to Support Families Affected by Complex Illnesses
FOR IMMEDIATE RELEASE For Download Click Here: Press Release 8.31.10 August 31, 2010 CONTACT: Howard Liebers ALEXANDRIA, VA – Close to 50 million Americans each year still struggle to access the health care services they need. We will not achieve health equity in the United States until each person has the opportunity to attain their full potential [...]