Burnout, depression, stress, anxiety - that stuff is REAL! Guys there is no need to suffer in silence like it’s a badge of honor. Do the right thing and take care of your mind the same way you take care of everything and everyone depending on you.
samhsa.gov/mental-health/wha…#MensHealthMonth#MensMentalHealth
#RareandReady is now on LinkedIn - linkedin.com/company/rare-re…
New space, same mission – improving access to care for those impacted by rare and genetic conditions. Follow us and help amplify patient voices!
⏰ The countdown is on! Only 23 Days Until LEAP Summit 2026! Join participants from around the world for the 2026 LEAP into Advocacy Summit. LEAP offers a unique opportunity to learn, connect, and drive meaningful change.
🔗 Register today: theewefoundation.org/leapsum…
DYK? June is Myasthenia Gravis Awareness Month. Learn more and raise awareness with the MG Awareness Month Toolkit from #RareandReady Coalition member @myastheniaorg.
bit.ly/MGAMToolkit
Your voice matters! Join hundreds of advocates today and call your lawmakers in Congress telling them that #steptherapy risks individuals’ well-being and we need reforms. Urge them to co-sponsor the #SafeStepAct and bring these needed reforms to Americans. bit.ly/StepAct
120…we are 120 #RareDisease organizations strong!
Together, we're amplifying voices and driving change in the rare disease community. United, we’re unstoppable. Join us at rareandready.org#RareandReady
This #MemorialDay, we honor our fallen heroes as well as the unsung warriors fighting rare diseases.
Their strength 💪and resilience inspire us all.
Let’s celebrate every act of bravery. #RareandReady
Legislation #RareandReady advocated on this year.
➡️IL SB 3049, VA HB 433, MD HB 1625: newborn screening
➡️CA AB 1887, WI AB 432: prior auth/step therapy
➡️CO SB26-140, IL HB 1443, HI SB 2933: PDABs
➡️CA AB 1798: genetic testing & insurance
Don't miss this webinar, tips for your next ER visit, from @bdcouncilca on 5/27 at 6:30pm PT. Register at: bdcouncilca.org/event/overco…
Dr. Tomlinson will tailor her advice to people with bleeding disorders and other rare diseases to ensure the best possible outcomes at the ER. #RareandReady
ALT This image is an announcement for the NORD Living Rare, Living Stronger event on May 15, 2026, in Denver, Colorado. It features a photograph of Lily Emmanuel, identified as a patient advocate and student, and the recipient of the 2026 Community Champion NORD Rare Impact Award. There is a NORD Living Rare badge in the top left corner.
ALT The image features a graphic titled "Innovative Approaches to Improving Your Rare Disease Care" along with the logos for NORD and Living Rare Living Stronger, Colorado. It includes photos of five individuals: Marybeth McAfee from NORD, Megan Abbott, MD from the University of Colorado, Alisa Gaskill, PhD from Children's Hospital Colorado, Margaret Macy, MD, an Associate Professor of Pediatrics specializing in Hematology, Oncology & Bone Marrow Transplantation, and Lianne McLean, RN, BN, MN from Terumo Blood and Cell Technologies.
ALT The image is a promotional graphic titled "Overcoming Insurance Barriers" featuring three headshots. From left to right, it includes Tiffany Sammons associated with NORD, Nick Kirchhof identified as a Rare Caregiver from Metropolitan State University of Denver (MSU), and Kavita V Nair, PhD, FAAN from the University of Colorado Anschutz Medical Campus. The background has an orange and blue theme, with a note to register at LivingRare.org.
May is Prader-Willi Syndrome Awareness Month! Play the video to hear from @KatieMoureau about #PWS.
We thank Katie and @PWSAUSA for their commitment to the #RareandReady coalition!