LISTEN TO OUR PODCAST

THE LATEST FROM PATIENT WORTHY

Rare Disease

My Big Sister

Editor’s Note: Patient Worthy is honored to present this story, shared with us by our friends at the Courageous Parents Network. Originally written by Dr.

Read More »
Chronic Lymphocytic Leukemia

The Weight of Thank You

Editor’s Note: Patient Worthy is honored to share the following story from our friends at Elephants & Tea, originally written by Michelle Lawrence, a patient

Read More »
Brain Cancer

Perpetually Healing

Editor’s Note: Patient Worthy is proud to share the following story from our friends at Elephants & Tea, originally written by Dillon Groover, a brain

Read More »

FEATURED

UPCOMING EVENTS

SIGN UP FOR OUR NEWSLETTER

Comments Box SVG iconsUsed for the like, share, comment, and reaction icons

Project Alive #HunterSyndromeHunter Syndrome Awareness Week is coming!

The third week of October is our opportunity to come together, raise our voices, and help more people learn about Hunter syndrome (MPS II). Whether you are a parent, sibling, family member, friend, or supporter, there are so many ways to get involved.

👕 Wear your support! Order your Hunter Syndrome Awareness Week “Fighting for Their Future” T-shirt and help spread awareness wherever you go.
store.projectalive.org/

📣 Bring Awareness Week to your community! Ask your local city, county, or state representatives to officially recognize Hunter Syndrome Awareness Week. We’ve created sample letters and a resolution template to make it easy to get started.
projectalive.org/advocacy#HSAW

Let’s make Hunter Syndrome Awareness Week impossible to miss.

#HunterSyndromeAwarenessWeek #HunterSyndrome #ProjectAlive #MPSII #FightingForTheirFuture
... See MoreSee Less

Project Alive #HunterSyndrome
Periodic Paralysis AssociationImage attachmentImage attachment+Image attachment

International Rett Syndrome FoundationDue to technical difficulties, IRSF's Rett in Focus Webinar, When Research Can't Answer Every Question, has been rescheduled for next Wednesday, October 14, at 3 p.m. ET. Join IRSF's Chief Scientific and Medical Officer, Dr. Dominique Pichard, and guest speaker Erin O'Connor Prange, MSN, CRNP, from CHOP, for this 30-minute conversation offering insight into how expert consensus may help shape care in Rett syndrome when research alone does not provide clear guidance.

Register today and submit your questions for the speakers: us02web.zoom.us/webinar/register/WN_3Lr3lRYUTxSdsOSIvSEaeg

This webinar is presented in partnership with Acadia Pharmaceuticals.
... See MoreSee Less

International Rett Syndrome Foundation
Load more