Rare Disease Impact Report quantifies patient and caregiver challenges on journey to diagnosis and beyond Getting a diagnosis is just the first of many challenges patients with rare diseases – and their caregivers – face. “We went through a number of specialists until we found a team that finally looked at my daughter, Hannah, as…
Rare Disease News
‘Disease Adovcacy’ Has Changed How Medical Research Is Funded
Repost from CBS Detroit ANN ARBOR — Patient-led advocacy has created a shift in the way the United States government prioritizes funding for medical research and has significantly changed the way policymakers think about who benefits the most from these dollars, says a public health researcher at the University of Michigan. In “Disease Politics and…
Private Insurance and Pre-Existing Conditions for Children with Rare Diseases
One of the more popular provisions of the Affordable Care Act (ACA) prohibits insurance companies from excluding coverage for individuals with pre-existing conditions. For families with children suffering from extensive medical conditions due to rare disease, this is a welcomed feature of the new health care legislation. Parents who were in between jobs without coverage…
Can Our Society Afford to Provide Treatments for People with Rare Diseases?
REPOST: A Medical Adviser to the National Organization for Rare Disorders (NORD) Responds to this Question WASHINGTON DC, Oct. 3, 2012—-Can our society afford to provide costly medical care for patients with rare diseases, or would that money better be spent on treatments for more common conditions affecting larger numbers of people? That…
Crowdfunding helps little girl get one step closer to a diagnosis
Reposted from Talking Points Memo. Written by Carl Franzen. Crowdfunding, or fundraising over the Web by soliciting a mass of donors, is good for more than just financing pet projects like music albums and iPhone accessories. Just ask the Nieders: The New York family of three (and one dog, Parker) have been searching for answers to…