Happy Friday Patient Worthians!
Believe it or not, we’ve almost made it through the first month of 2018!
This week, we have a story of a young girl with Sanfillipo syndrome who inspired an organization dedicated to awareness and research. We also have the story of a swimmer kicking HHT’s butt, and a contribution from a rare mother about how to cope with end-of-life decisions. Lastly, we have exciting MS treatment approval news.
So sit back and enjoy this week’s Editor’s Choice.
One Girl’s Diagnosis Inspired a Foundation for Children with Sanfilippo Syndrome
Abby is a smiley seventh grade girl who loves to dance. When she received a diagnosis of Sanfillipo syndrome, her parents knew they needed to take action.
Read more about this awesome foundation here.
Extreme Athlete Anthony Anzell Doesn’t Let His Hereditary Hemmorhagic Telangiectasia Slow Him Down
Swimming 19 miles is no small feat– see how this athlete with HHT raised funds and awareness for his rare condition.
Read more about the latest developments here.
Rare Disease Parents Face Premature End-of-Life Issues
PW Contributor Denise lends a word of compassion and wisdom for families who know a loved one’s life may be shortened by a rare disease.
Read about her experience here.
A New Multiple Sclerosis Treatment Just Got The Green Light In Europe
Exciting news for MS patients in Europe! OCREVUS was just approved.
Read the details here here.
