Liz Kennerley #LongCOVID #RareDisease
@LifeAccrdingLiz
#chronicillness #patient & Federal Health Policy #Advocate @SimmonsAlumni, @remember_girls Board member @RareDiseaseDiv1 Patient RISE award recipient. My views.
These #vaccines also offer protection against #COVID #variants. They will also help us return to the #workplace. Which is turn will reignite our #economy. #COVID19
To the millions of Americans getting vaccinated every day: your actions are a powerful demonstration of unity and resolve. And a reminder of what we can accomplish when we pull together. Thank you for doing your part to protect yourselves, your loved ones, and your neighbors.
Around the world, researchers are on a quest to create artificial blood. This blood would be universal and capable of lasting years, allowing it to be used in medical emergencies or remote locations. the-week.visitlink.me/kiCMFU
UMDF's No-Cost Genetic Testing is available again! All interested patients with suspected #mitochondrialdisease, should register in UMDF's mitoSHARE patient registry to get started! On Genetic Testing Action Day, let's bridge the gaps TOGETHER. Visit umdf.org/genetictesting
Biotech leaders: Strong intellectual property (IP) protections are essential to sustaining U.S. innovation leadership and ensuring expanded patient access to lifesaving treatments. Read more: bio.news/bio-convention…
The beauty of Diagon Alley. 😍 ® Harry Potter | #HarryPotter
In honor of the ADA’s 35th anniversary tomorrow, we would like to share this @AmExperiencePBS documentary Change, Not Charity. A full documentary might be too much for some but there are also links to articles, galleries & short videos. pbs.org/wgbh/americane… #ADA35 #pwME
#pwLC #pwME #NEISVoid controls still needed. I know this community can ensure these 6 people are found! Please reach out to those in your networks who might be eligible and ask them to consider this. Controls are well compensated for time/effort/travel.
1/ Have a loved one with Long Covid? Join the NIH's study on SARS-CoV-2 RNA & protein persistence! The NIH is seeking 6 healthy controls within the US for a series of tissue studies on Long Covid. 👉🏻Email [email protected] if you are interested!
Today, July 25, is the first-ever Genetic Testing Action Day! #GeneticTesting is essential at the first sign of childhood developmental delays, if you are living #undiagnosed, or if diagnosed with a #genetic disorder. Talk to your doctor. Start with the free resources at…
Jan received genetic testing through UMDF's No-Cost Genetic Testing program. Receiving her diagnosis was "an important step in moving forward." Our goal is to expand access to #genetictesting for those with suspected #mitochondrialdisease. Get started at umdf.org/genetictesting/
As the Trump administration looks to reshape biomedicine, it is taking aim at one of the most universal ways scientists study disease and determine whether drugs are safe and may work in people: animal research. trib.al/ykBJqFC
FDA’s cancer review teams have lost about 1/3 of the medical review staff that oversee products for breast and gynecological cancers and the malignant heme group may lose about 2/3 of its medical review staff—all to voluntary resignations clustered among more seasoned reviewers
When a therapist dies suddenly, what is left behind? nytimes.com/2025/07/24/hea…
The agenda is set for our Women’s Health, Unstuck event! Join Bill Gates and a range of experts for a discussion on flattening barriers to improving women’s health. Save your spot: trib.al/5YPcXKj
Calling all patients with Primary Mitochondrial Myopathy (PMM)! Please take 10-15 minutes to join our patient-populated registry, mitoSHARE. Be the first to join upcoming studies that might be a fit for you or a loved one with #mitochondrialdisease. Join umdf.org/mitoshare-regi…
Accurately estimating how many people are at risk of rare genetic conditions is challenging, as these conditions are often misdiagnosed or undiagnosed. The increasing scope and availability of large-scale genetic databases offers a new solution to determining accurate rare…
On July 14, NORD CEO Pam Gavin spoke at the #FDA’s public meeting on the upcoming reauthorization of the #PrescriptionDrug User Fee Act (#PDUFA). During her remarks, she emphasized the need for earlier patient engagement, advancing the Rare Disease Innovation Hub, addressing…
How do people actually diagnose chronic Lyme? I have had ME since I was 15, I got bitten by a tick from a known Lyme hot spot a few years before my ME began, and I have positive IgG for various Lyme proteins and species. I have ME, but do I have Chronic Lyme? I don’t know 🤷🏻♀️
😷 A summer COVID-19 wave continues to pick up in the U.S., with national metrics now showing definite increases in mid-July. Read this week's full COVID-19 trends report: bit.ly/4kPzfuv
Imagine if scientists could simulate a heart or brain before doing an experiment. That’s the future we’re building with #SingleCell data from the Billion Cell Project. These virtual models could change how we understand, prevent + treat disease. bit.ly/3U31D1e
We have lots of science updates for you! We are excited about these promising updates regarding the scientific work #MEAction is leading to advance the field of ME/CFS research and we hope you will be too! meaction.net/2025/07/22/mea… #pwME #MyalgicE #MECFS #LongCovid
4 in 5 teens who experience a menstrual cycle either missed or know someone who missed school because they didn’t have access to period products. On the blog, we share ways policymakers, researchers & providers can help to address #periodpoverty head on. policylab.chop.edu/blog/period-po…