Posted at January 6, 2014 4:59 pm by Diane O'Leary, PhD
It can be disheartening for rare disease patients to consider the problem of diagnostic delay. As NORD’s recent informal survey revealed, more than half of us spend three years or more looking for diagnosis and treatment. Once we find it, it’s natural to want to put the whole problem behind us. read more >
CAMBRIDGE, MA and DANBURY, CT—-Genzyme, a Sanofi company, and the National Organization for Rare Disorders (NORD) today announced the creation of a fund to pay for standard diagnostic testing for people with mysterious, undiagnosed medical conditions. The fund will help those who have applied to the National Institutes of Health (NIH) Undiagnosed Diseases Program but who cannot afford the basic medical tests needed to make them eligible to participate in the NIH program. read more >
Despite the current focus on logistical problems associated with the rollout of the Affordable Care Act, we must not forget that this law includes some important insurance reforms that were desperately needed, such as: read more >
Posted at September 18, 2013 7:50 pm by Leleah Robinson
Government agencies, industry, and patient advocacy groups all agree that a patient-centered perspective is vital during the processes of drug development, clinical trials, benefit/risk assessment, and regulatory review. However, legal barriers and proprietary constraints complicate when patients can be brought to the table and integrate their input.
At the FDA’s annual Patient Network meeting, “Demystifying FDA: An Exploration in Drug Development”, there was a concerted effort among all stakeholders to increase collaboration. read more >