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@PatientWorthy 1. Poor/delayed diagnosis. 2. Lack of awareness of #RareDiseases in the medical profession generally. 2. Healthcare inequalities making access to care difficult. 4. Inadequate genetics capacity - clinical genetics, counselling & labs.

RT @RareDiseasesIE: Join the campaign #GetRareAware calling on politicians to take action & press government to deliver its promise to ‘support the medical genetics service’ @CHI_Ireland Accelerate the allocation of resources to reduce the waiting list for routine genetic services for #RareDiseases https://t.co/XrhcyMXunu

#rareincolor #bipoc #rarediagnoses #rarediseases #raremedicalconditions #medicalconditions #community #education #wolframsyndrome #wsf1 #supportgroup

RT @EU_Health: @EU_Commission @EpiCARE_ERN And we are working towards a stronger EU response to #RareDiseases The European Reference Networks (#ERNs) are an essential part of the European #raredisease community and a vital part of the 🇪🇺#HealthUnion #PurpleDay More: https://t.co/FK2T3BMcfz https://t.co/3pjFEQv5Qb

RT @yeyomax1: ¡Latinoamérica avanza! Agradecimiento enorme a los participantes del 1er. Congreso Enfermedades Raras Latinoamérica y El Caribe y a quienes sumaron esfuerzos para que fuera realidad. #RareDiseases #ERCAL #AHF #FECOER #FECOERSomosTodos #UnidosPorLasRaras https://t.co/SZxpsjV27A

RT @yeyomax1: ¡Latinoamérica avanza! Agradecimiento enorme a los participantes del 1er. Congreso Enfermedades Raras Latinoamérica y El Caribe y a quienes sumaron esfuerzos para que fuera realidad. #RareDiseases #ERCAL #AHF #FECOER #FECOERSomosTodos #UnidosPorLasRaras https://t.co/SZxpsjV27A

How can you help? 🤷 Share your feedback with the Coordination and Maintenance committee! 👍 You can send them a letter by May 5 sharing why including #SLC13A5 and #rarediseases in the ICD codebook is important. 👏

Pple w/#PKdeficiency have ⬇️PK enzyme that results in ⬇️energy, anemia, fatigue, & ⬇️endurance. How can children w/#PKD be included in tag & endurance activities? #pyruvatekinasedeficiency #rarediseases #hemolyticanemia #inclusion #thrivewithpkd #fatigue #anemia #geneticanemia https://t.co/N7vYOePkiB

RT @revitadmd: RaDiChal Nedir ? #radichal #rarediseasechallenge #radichal2023 #dmd #duchennemusculardystrophy #dmdtürkiye #dmdaileleri #trgenmer #genterapi #nadirinsanlar #nadirhastalıklar #rarepeople #rarediseases #bmd #beckersmusculardystrophy #nedir @CihanTastan_PhD https://t.co/zpQb6CIR8l

RT @contactfai2r: ℹ️ Upcoming webinar @ern_reconnet March 29, 2023 4:00pm CET « #Pregnancy and #Antiphospholipid syndrome (APS) » 🩺 Angela Tincani (University of Brescia) and Silvia Aguilera (Asociación Española Síndrome Antifosfolipídico) 👉🏼 https://t.co/SeLOv94K2d #rarediseases #fsmr https://t.co/LUlz65Ci0u

RT @contactfai2r: ℹ️ Upcoming webinar @ern_reconnet March 29, 2023 4:00pm CET « #Pregnancy and #Antiphospholipid syndrome (APS) » 🩺 Angela Tincani (University of Brescia) and Silvia Aguilera (Asociación Española Síndrome Antifosfolipídico) 👉🏼 https://t.co/SeLOv94K2d #rarediseases #fsmr https://t.co/LUlz65Ci0u

RT @rarediseaseuk: There is a dedicated website in the UK for #relapsingpolychondritis where help, support and patient’s stories can be found. #CareForRare #rarediseaseday2023 #rarediseaseday #coordinatedcare #RareDiseases #rp https://t.co/xgRPRHswfy https://t.co/yROf6wJXhh

#RareDiseases What are the key #research priorities for ultra-rare inherited bleeding disorders? Follow @NHF_Hemophilia to learn more https://t.co/3MW8yXzRbV

RT @EU_Health: @EU_Commission @EpiCARE_ERN And we are working towards a stronger EU response to #RareDiseases The European Reference Networks (#ERNs) are an essential part of the European #raredisease community and a vital part of the 🇪🇺#HealthUnion #PurpleDay More: https://t.co/FK2T3BMcfz https://t.co/3pjFEQv5Qb

@EU_Commission @EpiCARE_ERN And we are working towards a stronger EU response to #RareDiseases The European Reference Networks (#ERNs) are an essential part of the European #raredisease community and a vital part of the 🇪🇺#HealthUnion #PurpleDay More: https://t.co/FK2T3BMcfz https://t.co/3pjFEQv5Qb

RT @FireBlueEmber: #Cute #Rustic #Mouse Coin #purse ! https://t.co/Z3WRNWuXMa #leatherfashion #coinmaster #mouse #uniquegifts #RareDiseases #disabled #needhelp “As an Amazon Associate, I earn a commission from qualifying purchases.”

There is little public knowledge about lysosomal diseases, which can lead to a lack of support for patients and their families. 🫂 Our goal? Explanations for everyone! #LysosomalDisease #RareDiseases https://t.co/L2bFZXokxA

Taking part in a clinical trial can be stressful for patients and their families, but travelling to the clinical trial site and managing expenses does not need to be. We take care of their travel needs and reimbursement. #clinicaltrials #clinicaltriallogistics #rarediseases https://t.co/i3bgHPz9yG

RT @UCBUSA: When it comes to improving the lives of women living with #rarediseases, there’s still so much work to be done. At UCB, we're working to advance science to help women like Niki, living with #myastheniagravis, make informed decisions about their healthcare. #WomensHistoryMonth

#Cute #Rustic #Mouse Coin #purse ! https://t.co/Z3WRNWuXMa #leatherfashion #coinmaster #mouse #uniquegifts #RareDiseases #disabled #needhelp “As an Amazon Associate, I earn a commission from qualifying purchases.”

@marklewismd I try to relay as an #MD dealing with #RareDiseases afflicting those from birth onward, ANYONE and EVERYONE can be affected with debilitating, life-threatening conditions, young/old and ANY socioeconomic status. Treat EVERYONE the same. #TipsforNewDocs #MedEd #MedTwitter

RT @ivanabacik: Glad to stand today with Áine & ⁦@declancabra⁩ in support of those children & adults with #RareDiseases ⁦@RareDiseasesIE⁩ https://t.co/DOCNqDt1GV

RT @contactfai2r: ℹ️ Upcoming webinar @ern_reconnet March 29, 2023 4:00pm CET « #Pregnancy and #Antiphospholipid syndrome (APS) » 🩺 Angela Tincani (University of Brescia) and Silvia Aguilera (Asociación Española Síndrome Antifosfolipídico) 👉🏼 https://t.co/SeLOv94K2d #rarediseases #fsmr https://t.co/LUlz65Ci0u

An Open Letter to Dr. Andrew Kolodny https://t.co/8HixwIbYk4 via @Loura_Stories @CDCgov @CDCDirector @POTUS @VP #MansInhumanityToMan #chronicillness #IntractablePain #StopHurtingSickPeople #ChronicPain #RareDiseases

Diana Castro, MD, founder of the Neurology Rare Disease Center in Dallas, Texas, discusses the pathophysiology of spinal muscular atrophy #SMA @SMA_UK_ #neurologyrarediseasecenter #rarediseases https://t.co/XyH1uAG4wk

What Is WHIM Syndrome? WHIM syndrome is a rare, congenital primary immunodeficiency disorder associated with neutropenia that typically presents in childhood or adolescence. @IDFCommunity Visit our website to learn more: https://t.co/lLft9CoYXo #rarediseases #WHIMsyndrome