Did you know The Orphan Disease Center (ODC, a center within the Perelman School of Medicine at the University of Pennsylvania) has a program to assist patient groups and families…
Click here to read part 1 and here to read part 2 After coming back from the Global Genes conference, Kristie was convinced that establishing a foundation was the right…
To read part 1 click here Kristie’s medical mystery was now solved. What was the next step? After speaking with her genetic counselor about her results, Kristie was referred to…
Kristie DeMarco was an extreme athlete- constantly training for triathlons, ironman races, ice swimming, and open water swimming. She loved to compete in various feats of strength and endurance. Overall,…
One of our partner organizations, the MDS Foundation, is hosting another free MDS Patient & Family Forum in Chapel Hill, NC. When: September 26th Where: The Siena Hotel 1505 East Franklin Street…
One of our partners, the MDS Foundation, Inc, is sponsoring another free MDS Patient & Family/Caregiver Forum. This event will be held in Birmingham, Alabama When: Saturday, February 1, 2020…
One of our partners, the MDS Foundation, Inc, is sponsoring another free MDS Patient & Family/Caregiver Forum. This event will be held in Houston, Texas When: Saturday, February 22, 2020 Where:…
The annual Code Talker award was presented during an engaging ceremony at the National Society of Genetic Counselors’ annual conference. Every year, patients submit essays nominating their genetic counselors for…
This is NSGC 2019 Conference Highlights Part 2, click here for part 1. An early morning session on the final day of the conference featured a personal story shared by…
Genetic Counselors are an incredible resource – they can help assess your risk of developing a condition, the risk of your children inheriting a condition, and what potential treatment or…
Kristina Wolfe and Seth Rotberg first crossed paths on LinkedIn, recognizing one another as fellow patients. Kristina is passionate about public heath, health economics, and the way non-holistic approaches to…
The 2019 FH Summit was a productive and moving event that brought patients and researchers together from all over the world. Katherine A. Wilemon, founder and CEO of the FH…
Sarah experienced her first symptoms at age eight. She suffered frequent and long migraines, despite being so young. Doctors were concerned she may have meningitis but never got to the…
Check out Part One here! Sean Baumstark and Kyle Bryant, hosts of the 2 Disabled Dudes Podcast, led a panel discussion with Neena Nizar, Onno Faber, and Katie Stevens. Kyle…
The 2019 Global Genes Rare Patient Advocacy Summit was filled with incredible presentations that highlighted steps for progress in research and advocacy organization, provided solidarity for the rare community, and…
One of our partner organizations, the MDS Foundation, is hosting another free MDS Patient & Family Forum in Dallas, Texas. When: Saturday, November 9th, 2019 Where: Aloft Hotel Dallas Love Field 2333…
Click here for Part 1 of Aunika's Story Despite the success of the transplant, baby Aunika wasn’t out of the woods yet. She continued to have issues with breathing and…
Every ultrasound Maggie had showed that her daughter, Aunika, was perfectly fine. The family was left in shock when she was born struggling to breathe. Baby Aunika was rushed to…
One of our partner organizations, the MDS Foundation, is hosting another free MDS Patient & Family Forum in conjunction with Kansas University Medical Center, with support from Celgene, Novartis, Takeda,…
Cure GM1 Foundation is hosting a family meeting filled with hope on Friday, September 20th! This gathering will be focused on community, clinical development and research updates, patient advocacy, and…
Our partner organization, The MDS Foundation, Inc., is sponsoring another free myelodysplastic syndromes (MDS) Patient & Family/Caregiver Forum in Nashville, Tennessee. When: Thurs., September 19, 2019, 9:00am – 2:30pm Where:…
At just nineteen, Beth often didn’t feel well and regularly had a sickly pallor. When she went to a doctor, the doctor dismissed her and told her she just needed…
I had the pleasure of attending the Glut1 Deficiency Foundation’s 2019 Conference. While this article can't possibly do the event justice and encompass all it had to offer, we will…
Patient Worthy had the privilege of attending another United Leukodystrophy Conference. The ULF’s 2019 event took place at the end of June in Illinois and had a record setting number…
Our partner, The MDS Foundation is sponsoring another free MDS Patient & Family/Caregiver Forum. The event will take place in Seattle, Washington on August 10th, 2019. When: Saturday, August 10,…
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.
