Helsedirektoratet har sendt oss følgende:
"På linje med andre europeiske land setter Helsedirektoratet sjeldne og lite kjente tilstander på dagsorden på skuddårsdagen.
Sted: Auditoriet i Helsedirektoratet, Universitetsgata 2
Tid: Onsdag 29. februar 2012 kl. 10.00 – 16.00
Konferansen er gratis, og åpen for fagfolk, personer med sjeldne tilstander og deres pårørende. Programmet er mangfoldig med innlegg fra både brukere og fagfolk.
Helsedirektoratet dekker reiseutgifter for inntil 2 representanter fra brukerorganisasjoner for sjeldne tilstander. Andre brukere/pårørende uten organisasjonstilknytning kan ta direkte kontakt for videre avklaring. Alle flybilletter må bestilles via vårt reisebyrå, og vi ber de som vil benytte seg av dette til å ta kontakt med Kersti Halvorsen i Helsedirektoratet, tlf. 80041 710/24 16 35 72.
Brukerorganisasjonene og de nasjonale kompetansetjenestene inviteres også til å ha stand.
Bindende påmelding gjøres på e-post sjelden@helsedir.no, eller på telefon
800 41 710/ 24 16 35 72
Vi håper mange vil være med på å markere denne dagen.
På grunn av strenge sikkerhetsrutiner ber vi de som kommer om å beregne god tid, og at legitimasjon medbringes."
Program for dagen finner du her.
Fra U.S. Department of Health and Human Services NATIONAL INSTITUTES OF HEALTH NIH News NIH Clinical Center (CC) <http://clinicalcenter.nih.gov> har vi mottatt følgende:
"RARE DISEASE DAY AT NIH RAISES AWARENESS AND HIGHLIGHTS CUTTING-EDGE RESEARCH
WHAT: The National Institutes of Health will celebrate the Fifth Annual Rare Disease Day February 29 with a day-long celebration co-sponsored by the Office of Rare Diseases Research-National Center for Accelerating Translational Research, and the NIH Clinical Center. The event will recognize rare diseases research activities supported by several government agencies and advocacy organizations.
Attendance is free and open to the public and the media, and pre-registration is encouraged. In association with the Global Genes Project (a grassroots effort to use jeans to raise awareness for rare genetic disorders), organizers urge all attendees to wear their favorite pair of jeans.
WHY: Rare Disease Day was established to raise public awareness about rare diseases, the challenges encountered by those affected, and the importance of research to develop diagnostics and treatments. There are about 7,000 rare diseases identified in the United States affecting an estimated 25 million Americans. About 80 percent of rare diseases are genetic in origin, and it is estimated that about half of all rare diseases affect children. In addition, what researchers learn by studying rare diseases often adds to the basic understanding of common diseases.
WHO: Organizers have put together an agenda of scheduled talks covering new technologies, such as genetic sequencing and stem cell therapies; new research paradigms like accelerated drug development; and new rare diseases, including PANDAS.
NIH Director Dr. Francis S. Collins will make remarks.
WHEN/WHERE: Rare Disease Day at NIH will be held in the NIH Clinical Center (Building 10) in Masur Auditorium on February 28, 2011, from 8:30 am to 5:30 pm.
Additionally, the U.S. Food and Drug Administration will hold a Rare Disease Patient Advocacy Day on March 1.
The NIH Clinical Center (CC) is the clinical research hospital for the National Institutes of Health. Through clinical research, clinician-investigators translate laboratory discoveries into better treatments, therapies and interventions to improve the nation's health. For more information, visit http://clinicalcenter.nih.gov. http://rarediseases.info.nih.gov/RareDiseaseDay.aspx>.http://www.fda.gov/ForIndustry/DevelopingProductsforRareDiseasesConditions/OOPDNewsArchive/ucm277194.htm> or call Sandy Walsh at 301-796-4669.www.nih.gov."
Se ellers informasjon på Frambus hjemmesider: http://www.frambu.no/modules/module_123/proxy.asp?I=17175&C=1&D=2