Patient Worthy’s partner the MDS Foundation will be hosting a patient forum on August 11th, 2018 from 9:30am-2:00pm "Whether you are a newly diagnosed patient, a long-term survivor, or a…
I met Jon at the 2018 United Leukodystrophy Foundation Conference and had the privilege of learning his and his family's story. Jon was born in Wisconsin in 1992, joining the…
Meet Andrea Wilson Woods (pictured below with her little sister); an author, public speaker, career coach, organization founder, and patient advocate. In her early twenties, Andrea became the legal guardian…
This is a continuation of An Interview with the Unstoppable Helena Baker. We had just learned about the multiple decades it took for her to receive her diagnosis of Fibula…
Helena Baker is the Vice President of Clinical Strategy at Medical Research Network, a Nurse, and also, a rare disease patient. I had the opportunity to interview her for a…
I had the chance to chat with Amber Olsen, the founder of The United MSD Foundation, and mother to Willow. This is their story. Willow had been a seemingly healthy…
Patient Worthy's partner The MDS Foundation will be hosting a patient forum and and their first ever awareness walk in July! The 5k will be held July 20th and the…
The PBCers Biannual Conference recently took place in Houston, Texas. The 2018 PBCers Conference was highly informative with topics ranging from the basics of Primary Biliary Cholangitis, dietary tips, updates…
Patient Worthy’s partner, The MDS Foundation, will be hosting another wonderful event for MDS patients and caregivers. Event Summary: Whether you are a newly diagnosed patient, a long-term survivor, or a…
The inaugural Homocystinuria Network America Conference was held April 21st-22nd in Westford, MA. The families in attendance traveled from all across the US for the event. They all have different…
It is international Pompe Day! “Together we are Strong” Today is meant to help create awareness for the Lysosomal Storage Disorder Pompe Disease, which is both rare and underdiagnosed. Pompe…
Patient Worthy’s partner, The MDS Foundation, will be hosting another wonderful event for MDS patients and caregiver. Event Summary: Whether you are a newly diagnosed patient, a long-term survivor, or a…
One of Patient Worthy’s partners, The MDS Foundation, will be hosting another FREE event! Event Summary: Whether you are a newly diagnosed patient, a long-term survivor, or a caregiver this event…
The PTEN Hamartoma Tumor Syndrome Foundation is facilitating a patient symposium, themed "Knowledge is Power", March 25-26th in Huntsville, Alabama. The event will begin with a meet and greet at the…
The Patients as Partners EU Conference, put on by The Conference Forum, took place at the end of last month in London. A diverse group met to collaborate and discuss…
One of Patient Worthy's partners, The MDS Foundation, will be hosting another FREE event! When: Saturday, March 3rd, 2018 9:30am – 2:00pm Where: Embassy Suites Albuquerque Hotel & Spa 1000…
Many people aren’t aware that even if they have their emergency medication with them, with instructions, that it may not be given to them. Their carefully labeled, lifesaving treatment could…
One of Patient Worthy's partners, The MDS Foundation, will be hosting another FREE event! When: February 3rd, 2018, 9:30am – 2:00pm Where: San Diego Marriott La Jolla Hotel Soledad Ballroom…
MonARC Bionetworks and the Pulmonary Fibrosis Foundation have partnered to bring the IPF community the PF Health app - a monumental partnership that will bring clinical research opportunities directly to…
Press Release: Lend Your Voice to the Fight to Breathe Faced by the UK’s Cystic Fibrosis Community Cystic fibrosis families from around the UK have joined forces to release a…
The Virginia Newborn Screening Advisory Committee met late last week to determine the fate of Pompe Disease and MPS-1 screening in VA. Before the vote took place, some families spoke…
The fate of newborn screening for Pompe disease and MPS-1 throughout the state of VA will be determined next week. The VA Newborn Screening Advisory Committee meeting will take place…
Another free event for MDS patients and caregivers is being held by the MDS Foundation! When: Saturday, November 18, 2017, 9:30 am-2:00 pm Presenters: Courtyard by Marriott San Antonio Medical Center…
Another free event for MDS patients and caregivers is being held by the MDS Foundation! Where: Residence Inn New York the Bronx at Metro Center Atrium Rooms A&B (second floor)…
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),…
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