Librarey

holy cow! what a start to Rare Disease Week! I've attended many events in the past for RDW but today was incredible! Over 1000 advocates from all 50 states gathered in Washington, D.C., ready to take action. Tomorrow, we head into 300 Congressional meetings to push for rare disease research funding, reauthorize the pediatric review voucher, and put patients first. #MakeAmericaCareAboutRare My bestie James Griffin set the tone for the day sharing his sickle cell story! everything after that was a messy blur! Hugging old friends - thank you Levi Gershkowitz , making new connections, and feeling the energy in the room reminded me why we fight every day—because patients deserve better. #RareDiseaseWeek #Warriors4Rare #RareDiseaseTruth

The Wellness REVIVAL is happening tomorrow, and I’m so excited to share this experience with all of you. Huge thanks to our incredible sponsors: Stoke Therapeutics, Librarey, and Comend—your support means everything to our caregiver community! ?? ? Stoke Therapeutics is transforming lives by developing groundbreaking medicines for severe genetic diseases. ? Librarey connects us with valuable rare disease and disability resources, making life a little easier for families like ours. ? Comend empowers patient groups to drive research and development forward, creating real change in our community. Let’s take some time to care for ourselves and have some FUN! Tomorrow - Jan 25th 12EST Register now - even if you can't join live please register so you can watch the recording. Stoke Therapeutics Librarey Comend

We’re live at?Global Genes?#WeekInRare! ?? This annual event brings together the rare disease community to share insights, support, and strategies for advancing patient care and advocacy. We’re here to listen—to caregivers, patient advocates, and YOU! ?? Your priorities are ours. We’re all ears, building relationships and networking to strengthen the rare disease community. ? Find us for a free sticker, and let’s connect! Sierra Phillips; Betty C. Trevino, M.Sc.; Albert W.; Flawnson Tong, and Megan McClure #RAREsummit?#RAREHealthEquity?#ggsummit?#careaboutrare?#librarey?#comendcare?#joincomend

So excited and grateful to be attending Global Genes #weekinrare again this year to represent the Warsaw Breakage Syndrome Foundation and Librarey. I got to kick off this amazing conference last night by reconnecting with some of the most inspiring and dedicated people in the rare disease space, like Wendy Erler Effie Parks E. Gay Grossman Steve Grossman Jennifer Siedman Daniel DeFabio and Jessica Fein. Looking forward to learning more, sharing our story, and connecting with old and new friends in the rare disease community! Are you attending #weekinrare2024 and want to connect? Reach out!

Thank you Sylvain Berthelot for having me as a guest on the On One Condition Podcast! Librarey is a huge passion of mine that was built out of frustration, pain, feelings of helplessness and isolation that often accompany a rare disease diagnosis and wanting to make a difference for rare disease and disability families everywhere. Thank you Comend for bringing Librarey to life for me and for being a champion for rare disease families like mine. Please follow along to stay up to date on all of the amazing progress being made on Librarey and to see what Comend is launching next to support the rare disease community! ?????? #warsawbreakagesyndrome #DDX11 #epilepsymom #heartmom #raremom #tubiemom #cochlearmom #twinmom #advocatelikeamother #librarey #showyourstripes #careaboutrare #raredisease #rarediseaseawareness #rarecommunity #rarediseasetruth #caregiversneedcaretoo #rarediseasesiblings #raresiblings #parentingrare #rarediseaseparenting #medicalmom #rareresources #disabilityisdiversity #disabilityawareness #rarecaregiver #raretwins #womeninRARE #rareadvocates

We’re seeking a highly motivated and creative individual to join our team as our Social Media and Community Coordinator (contractor to work about 6 hours per week). This role is instrumental in driving product awareness (through posts, including video creation) while fostering meaningful connections within rare disease and disability communities. If interested, please follow the instructions on how to apply :) https://lnkd.in/gBsGUTUZ

?? Explore Librarey, a platform designed to assist rare disease families in accessing resources more efficiently! Derived from Sierra Phillips' Disability Resource Guide, Librarey offers a search-based approach, connecting rare families and researchers in pursuit of innovative treatments. ?? ?? Begin your exploration: https://www.librarey.com #RareDiseaseAwareness #CareForRare