According to an announcement from invisionmag.com, the nonprofit organization Prevent Blindness has announced the fifth annual Thyroid Eye Disease Awareness Week, which is being recognized
Written by Heather Shorten, Founder, Pompe Alliance On July 15th, 2015, I was diagnosed with Pompe disease after about 3 years of searching for a
Mohammed was born with spina bifida, a condition in which part of the spine doesn’t develop properly, exposing sections of the spinal cord and nerves.
According to a story from Business Wire, the biopharmaceutical company Astria Therapeutics, Inc., recently announced that its experimental therapy navenibart has earned the US Food
Written by Bill Clark Part 1 – Our Journey from Fatty Liver to Liver Failure Becky’s fight is our fight. That became my “rallying cry”
Written by Lauren Williams On August 4, 2023, I contributed an article to Patient Worthy about how I transformed my mindset from “Why me?” to
An article in Globe Newswire described dermatomyositis (DM) as a rare disease that involves a unique skin rash and muscle weakness. Currently doctors are relying
Written by Vanessa O’Connell Hello, my name is Vanessa, and I am living with late onset Pompe disease, also known as glycogen storage disease type
Patient Worthy collaborator Heal Canada has recently released the 5th edition of its digital magazine E³ Advocacy—Empower, Engage, Educate. This publication is dedicated to sharing
According to a story from Healio, a recent study determined that adults living with Graves’ disease who were being treated with antithyroid medications will have
Mia was diagnosed with Osteosarcoma in 2018 and was told she was incurable in 2022. Since her diagnosis, Mia has worked with MIB Agents and
Written by Linda Shows Let me start with, I’m BLESSED even though I have Alzheimer’s disease (AD). I am a blessed wife, mother, daughter, sister,
Patient Worthy’s award-winning podcast “Wait, How Do You Spell That? A Rare Disease Podcast” is back with a new episode. This week, Colby is sitting
Written by Chuck Howe Nothing in life gives me greater joy than seeing my grandchildren be happy and thrive. You can imagine the heartbreak and
“Fate whispers to the warrior, ‘You cannot withstand the storm.’ The warrior whispers back, ‘I am the storm.” -Jake Remington This is Jaime Gibbons’ favorite
In 2023 a 19-year-old male teenager was suffering from memory decline that first began when he was 17 years of age. His cognitive losses continued
Happy Thanksgiving!
There is always something to be thankful for. 🦃 🍂
#ChildrensCraniofacialAssociation𝐑𝐞𝐠𝐢𝐬𝐭𝐫𝐚𝐭𝐢𝐨𝐧 𝐟𝐨𝐫 𝐂𝐂𝐀’𝐬 𝟑𝟓𝐭𝐡 𝐀𝐧𝐧𝐮𝐚𝐥 𝐅𝐚𝐦𝐢𝐥𝐲 𝐑𝐞𝐭𝐫𝐞𝐚𝐭 𝐚𝐧𝐝 𝐄𝐝𝐮𝐜𝐚𝐭𝐢𝐨𝐧𝐚𝐥 𝐒𝐲𝐦𝐩𝐨𝐬𝐢𝐮𝐦 𝐢𝐬 𝐨𝐟𝐟𝐢𝐜𝐢𝐚𝐥𝐥𝐲 𝐎𝐏𝐄𝐍! 𝘠𝘈𝘠! 🥳
𝘛𝘩𝘪𝘴 𝘺𝘦𝘢𝘳, 𝘸𝘦 𝘢𝘳𝘦 𝘶𝘴𝘪𝘯𝘨 𝘢 𝘯𝘦𝘸 𝘱𝘭𝘢𝘵𝘧𝘰𝘳𝘮 𝘧𝘰𝘳 𝘳𝘦𝘨𝘪𝘴𝘵𝘳𝘢𝘵𝘪𝘰𝘯/𝘴𝘤𝘩𝘰𝘭𝘢𝘳𝘴𝘩𝘪𝘱𝘴, 𝘸𝘩𝘪𝘤𝘩 𝘸𝘪𝘭𝘭 𝘢𝘭𝘭 𝘣𝘦 𝘥𝘰𝘯𝘦 𝘰𝘯𝘭𝘪𝘯𝘦!
𝐑𝐄𝐆𝐈𝐒𝐓𝐑𝐀𝐓𝐈𝐎𝐍 𝐃𝐄𝐀𝐃𝐋𝐈𝐍𝐄: March 15th or when all spots are filled
𝘗𝘭𝘦𝘢𝘴𝘦 𝘕𝘰𝘵𝘦: 𝘓𝘢𝘴𝘵 𝘺𝘦𝘢𝘳 𝘴𝘱𝘰𝘵𝘴 𝘧𝘪𝘭𝘭𝘦𝘥 𝘶𝘱 𝘣𝘦𝘧𝘰𝘳𝘦 𝘵𝘩𝘦 𝘥𝘦𝘢𝘥𝘭𝘪𝘯𝘦, 𝘴𝘰 𝘳𝘦𝘨𝘪𝘴𝘵𝘦𝘳𝘪𝘯𝘨 𝘦𝘢𝘳𝘭𝘺 𝘪𝘴 𝘳𝘦𝘤𝘰𝘮𝘮𝘦𝘯𝘥𝘦𝘥!
𝐑𝐄𝐓𝐑𝐄𝐀𝐓 𝐒𝐂𝐇𝐎𝐋𝐀𝐑𝐒𝐇𝐈𝐏 𝐃𝐄𝐀𝐃𝐋𝐈𝐍𝐄: January 5th
𝘗𝘭𝘦𝘢𝘴𝘦 𝘶𝘴𝘦 𝘵𝘩𝘦 𝘗𝘳𝘰𝘮𝘰 𝘊𝘰𝘥𝘦: 𝘚𝘊𝘏𝘖𝘓𝘈𝘙𝘚𝘏𝘐𝘗 𝘸𝘩𝘦𝘯 𝘧𝘪𝘭𝘭𝘪𝘯𝘨 𝘰𝘶𝘵 𝘺𝘰𝘶𝘳 𝘳𝘦𝘨𝘪𝘴𝘵𝘳𝘢𝘵𝘪𝘰𝘯 𝘧𝘰𝘳𝘮
𝐑𝐄𝐆𝐈𝐒𝐓𝐑𝐀𝐓𝐈𝐎𝐍 𝐋𝐈𝐍𝐊:
ccakids.networkforgood.com/events/78420-35th-annual-family-retreat-and-educational-symposium
𝘍𝘰𝘳 𝘘𝘶𝘦𝘴𝘵𝘪𝘰𝘯𝘴 𝘢𝘯𝘥 𝘊𝘰𝘯𝘤𝘦𝘳𝘯𝘴, 𝘌𝘮𝘢𝘪𝘭 𝘈𝘯𝘯𝘪𝘦 𝘢𝘵: 𝘢𝘳𝘦𝘦𝘷𝘦𝘴@𝘤𝘤𝘢𝘬𝘪𝘥𝘴.𝘤𝘰𝘮
We hope to see you next year!
#retreat2024 #ccaretreat #ccakids #craniofacial #facialdifference
© Copyright 2024 Patient Worthy
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
