• Skip to primary navigation
  • Skip to main content
  • Skip to primary sidebar

Little Miss Hannah Foundation

Support for Families of Children Diagnosed with Rare, Life-Limiting, or Complex Medically Conditions. Childhood Rare Disease Advocacy.

Make a Donation Volunteer Apply for Services
  • About Us
    • Our Mission
    • Meet our Team
    • Photos/Videos
      • Photos
      • Videos
    • Latest News
    • Our Impact Results
  • Hannah’s Story
  • Programs
    • Medical-Therapy Equipment Assistance Program
    • College Scholarship
    • Childhood Rare Disease Advocacy
    • Family Support and Activities
  • Upcoming Events
  • Get Help
    • Become a LMHF Family
    • COVID-19 Resources
    • Resources
  • Get Involved
  • Contact us

Rare Disease News

April 10, 2013 by Carrie Ostrea

Little Miss Hannah Continues to Impact the Rare Disease Community

Rare Disease Impact Report

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…

Filed Under: Blog, front side, LMHF News Tagged With: Hannah Ostrea, Rare Disease News

October 8, 2012 by Carrie Ostrea

‘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…

Filed Under: Blog, Front Tagged With: Rare Disease News

October 4, 2012 by Carrie Ostrea

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…

Filed Under: Blog Tagged With: Rare Disease News

October 3, 2012 by Carrie Ostrea

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…

Filed Under: Blog, front side Tagged With: Rare Disease News

September 1, 2012 by Carrie Ostrea

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…

Filed Under: Blog, front side Tagged With: Rare Disease News

  • Go to page 1
  • Go to page 2
  • Go to Next Page »

Primary Sidebar

Our Upcoming Event!


Vegas Cares About Rare Kids 5K
February 28, 2021

 

Featured Programs


Medical and Therapy Equipment Grant Program

Site Info

  • About Us
  • Our Mission
  • Latest News
  • Hannah’s Story
  • Programs

Get Involved!

  • Become a LMHF Family
  • Upcoming Events
  • Donate
  • Volunteer
  • Rare Disease Advocacy

Contact Us

10624 S. Eastern Avenue, Suite A-847
Henderson, NV 89052
Phone: (702) 608-2488
Fax: (702) 541-9957

Privacy Policy

Connect With Us

  • Email
  • Facebook
  • Instagram
  • Twitter

Copyright © 2021· Little Miss Hannah Foundation · Site By New Wave Media Design
Little Miss Hannah Foundation is a 501(c)(3) tax-exempt nonprofit corporation, EIN# 45-3993921