The 2019 NORD Living Stronger Forum was held in Houston, TX, at the end of June. The event brought families and physicians from all over for educational presentations, community, and…
Terri considers herself “very lucky”. In the 80s her paternal grandmother and her grandmother’s two sisters were diagnosed with ovarian cancer. In the 90s, her family entered into the BRCA1…
Our partner, The MDS Foundation is sponsoring another free MDS Patient & Family/Caregiver Forum. The event will take place in Iowa City, Iowa on Saturday July 20th, 2019. Event Summary:…
Patient Worthy's partner the MDS Foundation is hosting a MDS Patient & Family/Caregiver Forum Baltimore, Maryland in conjunction with the University of Maryland Marlene and Stewart Greenebaum Cancer Center. This…
In 2012 Tessa noticed a gap between her front teeth. She was a little confused. She had had braces when she was younger and her teeth hadn’t had any gaps…
Our partner, The MDS Foundation is sponsoring another free MDS Patient & Family/Caregiver Forum. When: Saturday, April 27, 2019 Where: West Penn Hospital 4800 Friendship Avenue Pittsburgh, PA 15224 Wintergarden Conference Center – First…
If you haven’t heard of bullous pemphigoid, you’re not alone, the condition isn’t typically well known even by physicians. For those living with it, this tends to mean a long,…
Our partner, The MDS Foundation is sponsoring another free MDS Patient & Family/Caregiver Forum. This forum will take place in Jacksonville, Florida When: Saturday, March 30th, 2019 Where: Mayo Clinic Cancer…
Our partner, The MDS Foundation is sponsoring another free MDS Patient & Family/Caregiver Forum. This forum will take place in Phoenix, Arizona. When: Saturday, March 9th, 2019 Where: Sheraton Crescent…
Read the first part of Lisa's story here. Lisa’s two direct and indirect bypass surgeries were successful. She now had seven times more blood flow to her brain than she…
At age twenty one, Lisa was about to graduate college and had a promising future career in front of her. All that was left was graduation itself. The week before…
A free MDS Patient & Family/Caregiver Forum, sponsored by The MDS Foundation Inc., will be held in Beverly Hills, California on February 2nd. When: Saturday, February 2nd, 2019 Where: Beverly…
Check out part one of Seth's story here. Seth had set a google alert for his hometown, Natick, to stay up to date in his home's local news. One day,…
This wonderful story was brought to Patient Worthy by our partners, the Cystinosis Research Network (CRN). The season of giving started off in an unconventional setting for the Moore Family. Chandler…
When Seth was twelve years old, he and the rest of his family began to realize something was wrong with his mother. Seth can remember conversing with her pleasantly, and…
This is part 2 of Leah's story, click here to read part 1 Leah listened as the doctor explained that her body couldn’t continue to be overexposed in addition to…
As Leah approached her late twenties she was, in her own words, a “tank.” She kept up with her ex-Marine husband’s work outs and ran every day. She was the…
This is Part 2 of Alexander's Story, click here to read Part 1. During Alex’s journey Jhoanny had gotten some information from NORD’s website and thought about getting involved. After…
Jhoanny’s son Alexander Matthew was born perfectly healthy in 2008. When Alexander was three, Jhoanny noticed he seemed to be drinking a lot of water and sweating a lot. Since…
The annual Global Genes Rare Patient Advocacy Summit is wonderful place for families affected by rare disease to come together and interact face to face with advocacy leaders in addition…
I hope that you know a wonderful doctor. The type who listens wholly, respects you, validates your concerns and opinions, and goes above and beyond to make sure you get…
The 2018 FH Global Summit featured fantastic speakers, timely information, and valuable insight about the past, present and future of the way FH is understood, diagnosed, and managed. The summit…
Don't miss this special two day event made possible by The Myelodysplastic Syndromes Foundation , Sylvester Comprehensive Cancer Center at the University of Miami and The Aplastic Anemia and MDS International Foundation MDS…
Our partner, the MDS Foundation, is sponsoring another free event for patients with MDS and caregivers. Event Summary: Whether you are a newly diagnosed patient, a long-term survivor, or a caregiver…
Our partner, the MDS Foundation, is sponsoring another free event for patients and caregivers. Event Summary: Whether you are a newly diagnosed patient, a long-term survivor, or a caregiver this…
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