Spiritual Self-Care Workshop Join embodied mindfulness Counselor Padma Gordon for a morning filled with discussion and meditation. The workshop includes a warmup grounding meditation followed by journaling and a conversation…
The last day in the month of February is recognized each year around the world as Rare Disease Day. The day serves primarily as a moment of spreading awareness about…
Policymakers Must Offer Solutions That Provide Patients with Lower Out-of-Pocket Costs For Critical Medicine In addition to coping with chronic illness, many patients are faced with the challenge of…
A survey created by Eurodis, a European rare disease advocacy alliance, has shown that those living with a rare disease have a worse healthcare experience than people with a chronic…
Every year for the past six years the National Organization for Rare Disorders (NORD) has published a State Report Card on the progress of rare disease policies in the states.…
Tom Kean, the Senate Republican Majority Leader in New Jersey, is leading the charge to fully realize a recently partially approved bill, which would create a New Jersey Rare Disease…
Journaling and Resilience Workshop Pamela Alma Weymouth will lead an hour long session of reflection and journaling. Learn self-acceptance and gratitude while writing about your week to cultivate resilience and…
Genetic testing is being used more frequently to screen people for the hereditary risk of cancer, according to MedCity News. While advancements have been made and research is ongoing, there…
California Rare Disease Advisory Council Virtual Coalition Meeting February 17, 2021 Legislation to create a California Rare Disease Advisory Council (RDAC) will be introduced by State Senator Susan Eggman in…
Genethon and WhiteLab Genomics have entered into a partnership agreement, which will allow them to further develop their work in artificial intelligence and gene therapy. Within the terms of the…
Spiritual Self-Care Workshop Join embodied mindfulness Counselor Padma Gordon for a morning filled with discussion and meditation. The workshop includes a warmup grounding meditation followed by journaling and a conversation…
In the past, patients with short bowel syndrome (SBS) were treated with teduglutide, a daily injection. However, injections can be painful, difficult to administer, and unfortunately not as targeted.…
Patient groups can optimize patient registries, cross-sectional studies, and/or longitudinal natural history studies to maximize collaborations with sponsors of orphan drugs and gene therapies. Written by Harsha Rajasimha, MS, PhD…
The United Kingdom has taken a big step in the right direction for rare disease patients, as they have recently created the UK Rare Diseases Framework. This framework is intended…
The COVID pandemic affecting eighty-million children in the nation has been a burden on many families. A number that deserves attention is the seven million students who have learning disabilities.…
Journaling and Resilience Workshop Pamela Alma Weymouth will lead an hour long session of reflection and journaling. Learn self-acceptance and gratitude while writing about your week to cultivate resilience and…
On her 23rd birthday, Sara Lefebvre almost died. After having some drinks with friends, her friend drove Sara home. But Sara didn't make it inside; she collapsed in sub-zero temperatures,…
Last year, 92.7 WOBM reporter Vin Ebenau sat down with Allie and Jonna Crocker, two sisters who live around the Jersey Shore, to discuss their experience with rare diseases. The…
Charlie Fry is a three-year-old from Kansas City living with SLC6A1. His family is very active in the SLC6A1 community, even starting a nonprofit titled "A Cure for Charlie." They…
By Rebekah Palmer The rare disease community has an all too common problem of not using precise language when it comes to addressing the people and the needs of…
The UK has recently began the practice of the new UK Rare Disease Framework, a government effort that aims to spread awareness, quicken the diagnostic process, and improve treatment and…
Illumina has just formed a new partnership with Emedgene. Emedgene is an AI company which works to automatically interpret and collect data for rare genetic diseases. This data will be…
One of the biggest concerns associated with the COVID-19 vaccines has been their effect on rare disease patients. There has been minimal research into this topic, leading many to be…
The Rare Disease Legislative Advocates' Monthly Webinar January 28, 2021 This months' webinar from the RDLA will focus on the policy priorities of the Everylife Foundation for year 2021, as…
VeDA Vestibular Disorders Association (VeDA) is a nonprofit organization that was founded in 1985. Its goal is to raise awareness of vestibular conditions, improve early diagnosis, and advocate for more efficacious…
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