Health Reform

ACTION ALERT: Costs of Caring for Children with Rare Disease Survey

By Amy Grover on January 9, 2012

Shivani B. Nazareth, RARE Blog contributor and a board-certified genetic counselor with Counsyl, Inc, is conducting an anonymous survey to better understand the financial cost of caring for a child with a rare genetic disease. By participating in this survey, you will contribute to a research paper that will quantify the financial burdens endured by parents of [...]

Posted in Take Action | Tagged children's rare diseases, cost of care, Counsyl, genetic conditions, genetic counselor, genetic disease, Health Reform, pediatric rare disease, Rare Disease, rare disease and children, rare disorder, research, research paper, study | Leave a response

Connecticut-based Advocacy for Patients with Chronic Illness files “Friend of the Court” brief in the United States Supreme Court Health Reform Case

By Amy Grover on December 14, 2011

Advocacy for Patients in the Supreme Court Connecticut-based Advocacy for Patients with Chronic Illness files “Friend of the Court” brief in the United States Supreme Court Health Reform Case Stating that “universal guaranteed issue, community-rated insurance is the promise of equal access to health insurance and, thus, health care for the chronically ill,” Connecticut-based Advocacy for [...]

Posted in Advocacy/Policy | Tagged Americans with Disabilities Act, Children with Rare Disease, children's rare diseases, Health Reform, rare disorders | Leave a response

The CLASS Act and Caregiver Village

By Howard Liebers on October 17, 2011

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.

Posted in Advocacy/Policy, News | Tagged aca, Aging and Disability Resource Centers, Alzheimers Association, Autism Society, Autism Speaks, calhoun bone pain project, CancerCare, caregiver, caregiver village, caregivers, caregiving, class, CLASS Act, community living assistance services and supports act, Disabilities, DISABILITY, health care reform, Health Reform, howard liebers, kathleen Sebelius, Kathy Greenlee, Libbie's Adult Day Care, long-term care, long-term care insurance plan, marbleroad, Medicare, National Military Association, patient protection and affordable care act, Police Wives, ppaca, rare, Rare Disease, rare diseases, rare disorders, Ted Kennedy, United Mitochondrial Disease Foundation, white house | Leave a response

Anti-ACA Litigation, Extenders Act and Rare Disease Day 2011

By Howard Liebers on December 16, 2010

A legislative update on anti-ACA litigation, the Medicare and Medicaid Extenders Act of 2010, and Rare Disease Day 2011. Oh, and HAPPY HOLIDAYS!

Posted in Advocacy/Policy | Tagged 340B, affordable care act, antonin scalia, childrens rare disease network, Chronic Inflammatory Demyelinating Polyneuropathy, community health centers, CONGRESS, constitution, health, Health Reform, Healthcare, hemophiliaX alpha-1 antitrypsin deficiency, henry hudson, howard liebers, hrsa, individual mandate, judge hudson, judge vinson, judge wigenton, justice scalia, marbleroad, Medicare and Medicaid Extenders Act, plasma users coalition, Pre-Existing Condition Insurance Plan, Primary Immune Deficiency diseases, rare diseases, roger vinson, supreme court, susan d. wigenton | Leave a response

R.A.R.E. Project's, Jonathan Jacoby to present at FDA Hearing on Rare Disease

By nboice on June 29, 2010

On Tuesday, June 29, 2010, and Wednesday, June 30, 2010, FDA’s Office of Orphan Products Development will host a two-day public hearing and Webcast on the Development of Articles for Rare Diseases. This public hearing is intended to gain from health care providers, academia, industry, patients, and other interested persons their perspectives on various aspects [...]

Posted in Advocacy/Policy, Bench to Bedside, News | Tagged Charity, Children, Children with Rare Disease, children's rare diseases, childrens rare disease network, Collaboration, communication, FDA, Francis Collins, genetic conditions, Genetics, Health Reform, joubert syndrome, kids, National Institutes of Health, Niemann Pick Type C, NIH, NORD, orphan disease, Orphan Drug Act, orphan drugs, public awareness, rare disease and children, Rare Disease Registry, rare disease treatments, rare disorder | Leave a response

Primary Care and HIT – What do they mean for you?

By Howard Liebers on June 2, 2010

Howard Liebers of MarbleRoad asks questions about how efforts in both primary care and health information technology may impact families with rare disorders.

Posted in Advocacy/Policy | Tagged childrens rare disease network, community health centers, Health Reform, hit, howard liebers, marbleroad, meaningful use, primary care, Rare Disease, Rare Disease Registry, rare disorders, technology, Undiagnosed | 1 Response

Quality of Life and the CLASS Act

By Howard Liebers on May 10, 2010

Howard Liebers of MarbleRoad talks about the CLASS Act within Federal health reform legislation and other efforts to help families impacted by a rare disease diagnosis achieve a better quality of life.

Posted in Advocacy/Policy | Tagged caregiver, childrens rare disease network, CLASS Act, Community Living Assistance, crdn, Health Reform, howard liebers, Kaiser Family Foundation, marbleroad, quality of life, Rare Disease, rare disorders, Thomas Maeder, Undiagnosed | 1 Response

MarbleRoad Comes to the CRDN Blog

By Howard Liebers on May 4, 2010

An introduction to Howard Liebers of MarbleRoad, who will be blogging weekly on the CRDN Advocacy/Policy channel.

Posted in Advocacy/Policy | Tagged childrens rare disease network, Collaboration, communication, crdn, Health Reform, howard liebers, Kakkis, marbleroad, Rare Disease, rare disorders, Undiagnosed | 1 Response

Dr. Francis Collins, NIH Director – Meeting of the minds!

By nboice on September 15, 2009

The Children’s Rare Disease Network was fortunate to be included in the first formal meeting organized by the new head of NIH, Dr. Francis Collins and his team. Allison Young, Founding Member and Legal Council, represented CRDN for these discussions, and reports below. http://videocast.nih.gov/ram/constituents090909.ram Dr. Collins provided insight into how he perceives NIH should focus [...]

Posted in Bench to Bedside, Featured, News | Tagged Challenge Grants, Children, Director of NIH, Dr. Francis Collins, drug discovery, Francis Collins, GARD, Gates Foundation, Health Reform, Hide & Seek Foundation, National Institute of Health, NHGRI, NIH, NPC, ORDR, pediatric rare disease, Personalized Medicine, Pharacogenomics, rare and neglected diseases, Rare Disease, Rare Diseasein Children, rare disorders, Therapeutics for Rare And Neglected Diseases, transformational research, WHO | Leave a response

A Rare Disease Champion at the helm!

By nboice on August 18, 2009

When I met Francis Collins for the first time, I remember thinking that he deserved a Nobel Prize — not because he decoded the human genome but because he understood what science is really about! I had told Collins, who was then Director of the National Human Genome Research Institute, about the SOAR project, started [...]

Posted in Bench to Bedside, Featured | Tagged Children, CONGRESS, Director of NIH, Dr. Chris Austin, Dr. Francis Collins, drug discovery, Francis Collins, Health Reform, Hide & Seek Foundation, Lysosomal Disease REsearch, National Chemical Genomics Center, National Human Genome Research Institute, Niemann Pick Type C, NIH, NPC, pediatric rare disease, rare and neglected diseases, Rare Disease, Rare Diseasein Children, rare disorders, SOAR, Therapeutics for Rare And Neglected Diseases, transformational research, TRND program | Leave a response