Take Action: Tell Congress Rare Diseases Patients Deserve Treatments
Tomorrow is a day of celebration, but TODAY is a day of ACTION. More than 70 patients advocates are on the Hill today meeting with Members of Congress. Please join them in the Lobby Day by taking 10 minutes to call your Representatives and ask them to support efforts to spur lifesaving treatments for rare [...]
PATIENT STORIES OF HOPE AND INSPIRATION – ‘MEET NOAH!’
My son, Noah, now 15 years old, first started having health problems as an infant. First, he had asthma, then chronic pneumonia, and as he got older, lots of horrible leg pain that made him writhe on the floor in tears. It was awful! There were a few times we thought we might lose him [...]
PATIENT STORIES OF HOPE AND INSPIRATION – ‘Meet Peyton!’
Peyton isn’t that much different than any other four year old if you ask her. She loves to color and dance and she is a ‘Yo Gabba Gabba’ fanatic. Luckily, she is still blissfully unaware of the stares directed her way when we go to the grocery store or the playground. Peyton was born with [...]
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 [...]
Are You a Blogger? Join our Blog Hop for RARE disease on January 30th!
We are calling all bloggers to join us in a RARE disease focused blog hop on Monday, January 30th which will be 30 days before World RARE Disease Day. What is a blog hop? A blog hop is when bloggers write about a common theme/topic on a specific date. The hosting blog (which will be [...]
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 [...]
The Cost of Care – 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 [...]
Enter to win an iPod Touch through the EveryLife Art Contest!
Easy to enter! Just upload a photo of your art on RareArtist.org and you could win an iPod Touch! We accept art in all forms: Painting Photography Mixed Media Collages Pottery Sculptures PRIZES: Two Grand Prizes will be awarded in each age group: Children 5-11: $100 Visa Gift Card Teens 12-17: $250 Visa [...]