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ARM issues statement on Dr. Peter Marks and the FDA’s Office of Therapeutic Products. alliancerm.org/press-release/…
We're thankful for you ... please see why in the text at this shared post. facebook.com/share/v/3UHXyR… #MLD #FMLD #raredisease #thankful #blessed #genetherapy #newbornscreening
Times up to register for the 2023 MLD Family Conference™! TODAY is the last day to join the weekend of FUN July 14 & 15 in Knoxville, TN. mld.foundation/conference Questions? [email protected]
Advocating (again!) for the MLD community at the Alliance for Regenerative Medicine fly-in on Capital Hill (DC). #CGFlyIn23 #raredisease #FMLD #MLD
𝗙𝗮𝗺𝗶𝗹𝗶𝗲𝘀 𝗮𝗻𝗱 𝗳𝗿𝗶𝗲𝗻𝗱𝘀 𝗶𝗻 𝗜𝗟, there is a hearing scheduled on 𝗦𝗕 𝟲𝟳 in the House Human Services Committee for this Wednesday, April 19th at 8:30 am. Submit witness slips at the following link. my.ilga.gov/WitnessSlip/Cr…
You're doing a great job Kathleen O'Sullivan Fortin ... and looking so good on camera! #ALDPFDD #RareDisease #ALD @ALDConnect
The MLD community hosts a PFDD meeting Oct 21st ... check in with the #ALDPFDD if you want to see what these meetings are all about. #raredisease #FMLD #MLD
Adult ALD patients and families … #ALDPFDD is going on now aldconnect.org/pfdd-english-l… #RareDisease
The afternoon awaits – please join our friends at @aldconnect & share your voice with the FDA. #ALDPFDD #raredisease aldconnect.org/pfdd-english-l…
Are you missing your bag at DFW. Arrived gate 4 approx 7:45pm CT. It was under the plane - I told the gate agent and they moved it to the driveway where all are driving by and ignoring it. #fail #AA #AmericanAirlines #lostLuggage
It only takes 15-20 minutes to start participating in the AllStripes research program. Your MLD journey can help with a wide range of research efforts. Learn more here: allstripes.com/mld"
Lexi is an ambassador for AllStripes’ MLD research program. She is a mother and advocate for Axel who is living with MLD. Learn more at allstripes.com/mld.
Congratulations to @HuntersHopeFDN and the entire Krabbe community as their RUSP newborn screening Nomination moves to evidence review. #krabbe #raredisease #newbornscreening
EL-PFDD is coming for the MLD Community ... Oct 21st 10am-4pm EDT
By joining the AllStripes MLD research program, you can help move research forward. To help unlock insights including average age of symptom onset and most common first symptom, visit allstripes.com/mld."
MLD Foundation continues to work aggressively and proactively on both newborn screening and access & reimbursement, to identify patients & reimburse therapies 3 of 3 #Germany #EMA #Libmeldy #genetherapy #raredisease #MLD #FMLD #GKVSV #GesetzlicheKrankenversicherungSpitzenverband
Orchard is in IND communication with the FDA, which we hope will lead to a US application for FDA review & approval. 2 of 3 #Germany #EMA #Libmeldy #genetherapy #raredisease #MLD #FMLD #GKVSV #GesetzlicheKrankenversicherungSpitzenverband
Libmeldy, the MLD gene therapy approved in Europe by the EMA 12/20, was just approved for reimbursement in Germany, joining Italy and the UK for '22 approvals. 1 of 2 ir.orchard-tx.com/news-releases/… #Germany #EMA #Libmeldy #genetherapy #raredisease #MLD #FMLD
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