It is Patient Worthy’s pleasure to report on the first International Acromegaly conference which brought together acromegaly support groups from East and West Canada,- The Vancouver and Atlantic Acromegaly support…
I know many people who would love to go to a local support group, but there either isn’t one in your area or you are not well enough to attend.…
Rare Disease family members often hear, “I don't know how you do it.” This remark usually refers to the physical and emotional aspects of the condition, but those who make…
Happy Pre-Halloween Patient Worthians! October is Dwarfism Awareness Month. Not only that, MDS World Awareness Day was just two days ago! Get the deets below. We also have a story…
Check out part 1 of this LGS post here. After prepping: Arrive at the airport early – Ask the airline agent at check-in about getting your wheelchair assistance. Use this…
Traveling is certainly possible and can be more relaxing with some pre-planning and organization. Some of these ideas may not be applicable to you and your family. I have compiled…
The International Myotonic Dystrophy Consortium was held in San Francisco last month and while Patient Worthy was not there in person we were fortunate to have a family reporting from the…
Happy Friday Patient Worthians! This week, we some news to be happy about! We have an awesome story of how thinking like a start up will help lead to more…
The first ever rare disease film festival took place the first week of October in Massachusetts! Founded by rare disease parents Bo Bigelow (USP7 mutation) and Daniel DeFabio (Menkes Disease),…
Happy Friday Patient Worthians! This week, we have an awesome story about PW Partner Avery's Angels. We also have a PW Contribution about key lessons everyone can learn from the…
There are people in society who seek to divide us based on what our differences are, such as color, ethnicity, religion, dialect, lifestyle, political persuasion, neighborhood, level of education and…
TGIF Patient Worthians! This week, we have two opportunities where you can spread some love. You can help a young boy with microcephaly and/or contribute to amyloidosis research. We also…
It's Fall "Y'all"! This week, we have PW Contribution from a man with CMT. We also have one on raising a child with rare disease. We also have good news…
When raising children, parents spent a lot of time discussing the challenges of child-rearing with others, reading articles and books, and wondering if we were doing the right thing in…
The first story that comes to Quentin's mind about a turning point in his life is about his attendance at a school for the blind. When Quentin lost his vision…
I like nonsense, it wakes up the brain cells. Fantasy is a necessary ingredient in living, It’s a way of looking at life through the wrong end of a telescope.…
I was laying on the cold, hardwood floor again after drinking phospho cysteamine(the earlier form of Cystagon, treatment for Cystinosis). My stomach was roiling and I was overheating from the…
Welcome back Patient Worthians! We are back this week from the 2017 Global Genes Rare Advocacy Summit. Did you attend? If so, what did you learn? Let us know here. This…
If you missed the 2017 Global Genes Patient Summit's breakout session Strengthening your Care & Support Team, Home Team Advantage: How to Arrange for Palliative Care, we're here to fill…
Happy Friday Patient Worthians! It's the week of the 2017 Global Genes Advocacy Summit, and we have the details for you. First, we have a PW contributor's take on conferences,…
It can be pretty difficult to live in a world where very few people understand your rare disease life. Thankfully, there is a way to find others through the internet,…
Since this is my first contribution to Patient Worthy, I thought I would spend some time writing about the process it took to receive my diagnosis of idiopathic pulmonary fibrosis…
You know the best thing about a 3-day weekend? A 4-day work-week! We hope you had a fun and safe Labor Day Weekend here in the states. How do you…
Happy Labor Day Weekend! It is our hope that all of our readers are safe and sound with family this weekend. Given the tragic hurricane flooding in Texas (and India)…
I remember when the local news reporters interviewed my parents as a child. They asked the caretakers many of the questions at the time. People want to hear the story…
© 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.
