Rare Pictures of Hope™ – Submit Your Hope Photo Today!
When one of our parent advocates re-posted a picture she found with our slogan, “Hope. It’s in My Genes!” we never imagined it would have the effect that it did. There have been more than 700 photos posted to Facebook since last week! Each and every picture touches a string in our hearts and we [...]
PATIENT STORIES OF HOPE AND INSPIRATION
‘MEET THE SPOONER FAMILY!’ Rick and Cristyn Spooner of Rancho Santa Margarita have fostered a dynamic husband and wife team both as business partners and in raising three beautiful children. Despite achieving success in operating their loan company, the Spooners have faced greater challenges and discovered even greater meaning in their lives through the caring [...]
PATIENT STORIES OF HOPE AND INSPIRATION – ‘MEET THE WILSON BROTHERS!’
My brother, Marshall is my Hero! He saved my life. At 17 months of age, he was diagnosed with a RARE Leukodystrophy called Krabbe’s Disease. A genetic disorder affecting the nervous system and it’s communication to the brain. There is NO CURE and it is fatal! Once my family and our doctors determined what [...]
CNN Health – Mom claims in viral blog that disabled child denied transplant
(CNN) — Can a patient be rejected for a kidney transplant based on a developmental disability? A New Jersey mother alleges in her blog that this happened to her 3-year-old daughter, and it has sparked an Internet uproar. Whether a person with a mental disability qualifies for an organ transplant is a decision made on [...]
Improving Drugs and Biologics for Children – Washington DC Briefing
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ACTION ALERT: Costs of Caring for Children with Rare Disease Survey
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 [...]
Submit Your Story to the Rare Children's Storybook Project by January 13
Has your family submitted to the “Rare Children’s Storybook Project” yet? Your story could win up to $750 to help with medical costs. The deadline has been extended to January 13. MarbleRoad who is managing this promotion was awarded an “Empowerment Grant” from Genzyme to hold an online contest within the rare disease community for [...]
Costs of Caring for Children with Rare Disease: Online Survey
The daily routines of those who care for children with rare genetic diseases are challenging. In his new book, “The Boy in the Moon,” Ian Brown describes his personal struggle to cope with his son’s diagnosis of cardiofaciocutaneous syndrome. Brown details how he learned to communicate with his son, who is unable to speak, and how [...]
75 Days Until World Rare Disease Day!
It’s December 15th and that means only 75 days left until World Rare Disease Day on February 29th, 2012! The number 75 is significant for the rare community. According to the NIH’s Office of Rare Disease Research, 75% of RARE diseases affect children making this disease category one of the most deadly and debilitating for [...]
Connecticut-based Advocacy for Patients with Chronic Illness files “Friend of the Court” brief in the United States Supreme Court Health Reform Case
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 [...]