Are you raising awareness for Rare Disease Day this year? Using #RareDiseaseDay helps members of the rare disease community find each other, build solidarity, and get involved in Rare Disease Day. Find out how you can get involved: cutt.ly/dPlzx3U

Time to recognize our place - participants are ready, now recruiting for investigators! science.org/doi/10.1126/sc… Genetic Alliance @LunaDNA_

A tiny step forward for #dataprivacy legislation (in the USA) in State of the Union. Good that data surveillance on children called out - start here and extend! Congress should focus on the #datarights of individuals as the core - like in #GDPR. @LunaDNA_ dailydot.com/debug/children…

Check out Scott Houston's World Piano Day event and giveaway! Help me boost my chances of winning a free keyboard or piano lessons. Follow the link! giveaway.pianoinaflash.com/world-piano-da…

Congrats to San Diego Blood Bank and @LunaDNA_ on this innovative partnership that gives blood donors an opportunity to contribute more meaningfully to health research! #WorldBloodDonorDay #research

Please consider sharing this if you have friends/family impacted by MPSII/Hunter Syndrome. Accelerate collective understanding and gain personal insights too!

I’m so fortunate to be able to work with such a talented, passionate, and innovative thinker. Meet my friend, Dawn Barry. canvasrebel.com/meet-dawn-barr…

Join me on November 22 for an From Testing to Targeted Treatments (FT3) session on shared clinical decision-making in #precisionmedicine 🗓️ Excited for the discussions to come! Register now ➡️ bit.ly/3U9Eybh CC Made WITH Patients EUPATI European Patients' Forum

#DidYouKnow? #PrecisionMedicine is about putting the #patients and their experience at the center by designing a treatment plan specific to them ➡️ bit.ly/3G3ILcZ

Join Our New Study to Measure Health and Well-Being in Your Community - mailchi.mp/geneticallianc…

In the last 2 decades, the number of #targetedtherapies has risen. This translates into a growing number of patients that can benefit from these new treatments. Want to learn more about #precisionmedicine? Discover the Story of Precision Medicine bit.ly/3T31kSZ

Join me in celebrating the people and initiatives shaping the #PatientEngagement space today. Discover the “MADE WITH PATIENTS Award. I already nominated someone - who’s next? bit.ly/443DdbY

Facing #Alzheimers is tough enough already. Tear down Medicare’s barrier to FDA-approved Alzheimer's treatments, Rep. Colin Allred Senator John Cornyn Senator Ted Cruz. Help us #ENDALZ #progress

Going to #ASCO23? Don't forget to pack your #masks and some rapid tests. Tally of covid-19 cases after CDC conference climbs to 181 washingtonpost.com/health/2023/05…

FUNDING OPPORTUNITY: The PhRMA Foundation is seeking research proposals on the use of #digitalhealth technologies in underrepresented populations in clinical trials to advance regulatory decision-making. Learn more & apply: bit.ly/PhF_DHTs #healthequity #DHTs

📢 Now live! From Testing to Targeted Treatments (FT3) publication calls for new intersectoral collaborative approach for better patient outcomes. Discover it now at bit.ly/44m9RF8 & share it with your network!

There’s no wrong time or place to remind people that it’s time to stop seeing ourselves as having one complete human genome reference! One genome sequence can’t possibly represent everyone’s diversity.

Join me in celebrating excellence in #patientengagement at this year’s edition of the “Made with Patients'' awards. So many people and projects deserve recognition. Nominate someone now: eu1.hubs.ly/H06ZKl60

On the International Day of Women and Girls in Science, let’s help girls everywhere pursue careers in science, technology, engineering and math. Our world is better with their ideas and perspectives.

New on the list for how devious cancer cells can be: ✓ change their driver mutation and identity during treatment ✓ steal mitochondria from T-cells ✓ secrete a virus-like protein that unleashes autoimmunity —and what to do about it in the new Ground Truths (link in profile)