@MLDfoundation
 international
mldfoundation.org
Joined January 2009
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  • Followers364
71Media
We congratulate the rare disease advocates and public health officials who worked tirelessly to make today’s progress possible—and we especially recognize and honor the Duchenne and MLD communities and the patient advocacy organizations who never gave up, especially the condition nominators: @ParentProjectMD, @MLDfoundation, and @MDAorg Thank you to Secretary @RobertKennedyJr and @HHSGov for demonstrating a strong commitment to newborn screening and the federal RUSP. To read the full story and learn more visit: bit.ly/3N3Mbld Pictured below: Annie Kennedy, @RogerWicker, Pat Furlong, @Bilirakis
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“Thank you, @SecKennedy, for your leadership in adding Duchenne Muscular Dystrophy and Metachromatic Leukodystrophy to the Recommended Uniform Screening Panel. Every child deserves the healthiest possible start. Early detection brings earlier care, better outcomes, and more hope for families nationwide.” — Dr. Stephanie Haridpolos, Chief of Staff and Senior Advisor
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ARM issues statement on Dr. Peter Marks and the FDA’s Office of Therapeutic Products. alliancerm.org/press-release…
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We're thankful for you ... please see why in the text at this shared post. facebook.com/share/v/3UHXyRe… #MLD #FMLD #raredisease #thankful #blessed #genetherapy #newbornscreening
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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]
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Advocating (again!) for the MLD community at the Alliance for Regenerative Medicine fly-in on Capital Hill (DC). #CGFlyIn23 #raredisease #FMLD #MLD
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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/Crea…
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You're doing a great job Kathleen O'Sullivan Fortin ... and looking so good on camera! #ALDPFDD #RareDisease #ALD @ALDConnect
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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-… #RareDisease
The afternoon awaits – please join our friends at @aldconnect & share your voice with the FDA. #ALDPFDD #raredisease aldconnect.org/pfdd-english-…
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Our friends at @aldconnect have kicked off the ALD community's EL-PFDD meeting #ALDPFDD
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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
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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
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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
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