February 29 – A Celebration of Unity
The Month of February During the month of February, much of the American population will be celebrating historical events, special interest groups and campaigns. Some of these include Black History, American History, Children’s Dental Health, and American Heart Month. Internationally recognized events in February include National Embroidery month (my favorite), Wild Bird Feeding, Cherry and [...]
A Life with PKU (Phenylketonuria)
‘THIS IS MY NORMAL’ Kevin Alexander is a normal guy. He likes to play electric guitar, video games, and write music. He enjoys listening to movie sound tracks, playing in a band and is a professional Videographer. What most people would not realize about Kevin is he is living with Phenylketonuria (PKU) – [...]
PATIENT STORIES OF HOPE AND INSPIRATION – ‘MEET ANNA!’
Fourteen and a half years ago, our lives were changed forever. Our one week old baby girl was diagnosed with a disease that we thought was created in a novelist’s imagination. We quickly learned that it was a very real, yet rare, disease that would nearly claim our daughter’s life. Our daughter Anna was born [...]
PATIENT STORIES OF HOPE AND INSPIRATION -’MEET ALEJANDRA!’
My name is Alejandra Islas. I’m a kindergarten teacher, living in Mexico City, Mexico. I was diagnosed with Hypereosinophilic Syndrome (HES), in 1998, at a time when medical databases showed only six cases with symptoms similar to mine, and with a life expectancy of 6 months. My symptoms started 13 years [...]
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 [...]
RARE Disease Lobby Day
WHEN: February 28, 2012 WHERE: Washington, DC WHO: RDLA RDLA (Rare Disease Legislative Advocates) is partnering with the EveryLife Foundation for Rare Diseases, RARE Project, Sarcoma Foundation of America, Darlington House and ViroPharma to ensure that rare disease advocates are present on Capitol Hill during Rare Disease [...]
EVERYLIFE Art Contest – Extended Deadline for Children & Teens
Submit art by Tuesday, February 7, 2012 at 5 pm PT To encourage more children (ages 5-11) and teens (ages 12-17) to enter the contest, we have extended the entry deadline by 1 week.Easy to enter! Just upload a photo of your art on RareArtist.org and you could win a Visa Gift Card and an iPod Touch! We [...]
Managed Named or Compassionate Access to Drugs Still in Clinical Trial
I am participating in an interview tomorrow on early access to drugs that are in Clinical Trial under Managed/Named/Compassionate Access programs (it appears the names are different but the programs are similar). If you have experiences you wish to share about acces during Phase III Trials I would be interested in learning about them – [...]
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 [...]