ALD Raremark @ALD_Raremark
Page no longer active. Follow @RaremarkHealth for #ALD Our vision is to shape a world where all rare conditions are understood and treated. #RareDisease raremark.com/adrenoleukodys… Joined August 2018-
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Follow our new page @RaremarkHealth today! This page is no longer making any active posts, but please hop over to @RaremarkHealth for continued rare disease news, updates - including posts on #ALD!
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Have you followed @RaremarkHealth yet? This page will no longer making any active posts so follow @RaremarkHealth for continued rare disease news, updates and more - including posts on #ALD!
ALD Raremark retweeted
Great to see @UtahDepOfHealth now doing newborn screening for #adrenoleukodystropy #ald! kutv.com/newsletter-dai…
ALD Raremark retweeted
Two men ride across country to raise adrenoleukodystropy #ALD awareness. Good luck and be safe! ow.ly/LWTU30a6YKN
How is adrenoleukodystrophy (ALD) diagnosed? Like many rare diseases, it’s not always easy to get a diagnosis for ALD. Learn what doctors are looking for, and how they diagnose someone with #ALD. #Adrenoleukodystrophy bit.ly/2VlYbAT
What is CRISPR? And how does it work? CRISPR is a powerful gene editing tool that can make changes to the DNA of any living thing. But even if it cures some rare diseases in the future, there are still ethical questions. Learn more here. #ALD #CRISPR bit.ly/2WtliNh
Being a caregiver for someone with a #RareDisease can be tough. Learn more about the financial challenges faced by rare families and what help is available #carer #ALD #savetheboys #leukodystrophy bit.ly/3aeNPYJ
We’re Raremark, and we’re building an online platform for rare disease patients and caregivers. To make sure it’s useful, we’re running a survey to find out what content patients & caregivers would like to see on our site. Let us know #Adrenoleukodystrophy bit.ly/3rTeyE5
What is gene therapy? Around 80% of rare diseases have a genetic link. Many of these diseases don’t have any good treatment options, but gene therapy might help. So what is gene therapy, and how does it work? bit.ly/3gcrX5t
What does 'patient voice' mean to you? #Adrenoleukodystrophy #ALD
Communicating with doctors and other health professionals isn’t always easy. We look at a few things you can do on your end that can help improve communication. #RareDisease #RareHeroes #RareHope
“ALD does not write the story of my son. ALD may only be a chapter in that book.� Read Darcy’s story about her son’s fight with #ALD #Leukodystrophy #Adrenoleukodystrophy bit.ly/3l5pBpJ
We’re running a survey to find out what patients and caregivers would like to see on Raremark. Let us know what’s important to you, including any topics you haven’t had the courage to ask about yet. Take our survey today! #Adrenoleukodystrophy #ALD bit.ly/3rTeyE5
Asking for emotional support when things get tough. If you’re not asking your friends and family for help, you’re missing out on important sources of support. #Adrenoleukodystrophy #ALD bit.ly/36px7pp
What is adrenomyeloneuropathy (AMN)? Adrenomyeloneuropathy (AMN) is an adult form of ALD that primarily affects the spinal cord, so is usually characterized by weakness and stiffness in the legs. #Adrenoleukodystrophy #Adrenomyeloneuropathy bit.ly/3iHFGBJ
Brain-sparing cord blood transplantation for the borderline stage of adrenoleukodystrophy. #Adrenoleukodystrophy #ALD bit.ly/3zjHcRs
What is gene therapy? Scientists can use gene therapy on cells that are inside or outside the body. Read more in our article. #Adrenoleukodystrophy #ALD bit.ly/2WrjlxF
Caring for a rare caregiver: challenges faced by the parents and loved ones of people with rare diseases #ALD #adrenoleukodystrophy #raredisease bit.ly/2VGfK1A
RareCan @RareCanUK
458 Followers 1K Following Supporting people to understand their cancer and their options. Genomic testing and UK clinical trial insight. Cancer is personal. Understanding should be too.
Bill @billgroel
48 Followers 360 Following Backyard Birder | Wannabe Yogi | Runner | Mentor for ALD families
MAGIC Clinic @magic_clinic
77 Followers 128 Following M.A.G.I.C. stands for Metabolics and Genetics in Calgary. We are a medical clinic that specializes in looking after patients with rare genetic disorders.
Justin @ALD_Daily
116 Followers 193 Following 36 year old with Adrenoleukodystrophy and Addison's Disease. Tweeting about my illness to show others they are not alone.
LDNBSActionNetwork @LDNBSAction
71 Followers 118 Following The Leukodystrophy Newborn Screening Action Network is a coalition of leukodystrophy patient advocates dedicated to championing the cause of newborn screening.
PHUA Wee Seng @phuaweeseng
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Lara Furst @LaraSheaB
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Tara O'Meara @teomeara
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Alström Syndrome U... @AS_UK
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jayxie1989 @jayxie1989
0 Followers 5 Following
Miss Kirstin Goddard @MissKirstinMG
66 Followers 412 Following Mum of 2 👱��♂�👧�. Views are my own.
MRK DRTY @MRKDRTY007
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Raremark @RaremarkHealth
1K Followers 578 Following Helping you better understand, manage and talk about rare disease. Join us at https://t.co/QfQK9hoRXm
Cure MLD @cure_mld
109 Followers 163 Following We are on a mission to #cureMLD, a #lysosomalstoragedisorder (LSD) & #leukodystrophy impacting kids & adults. #genetherapy #advocacy https://t.co/AlcnvCedda
STUKKI 🧬 @stu_kki
544 Followers 893 Following 27æ‰�ã�®æ�¯å�（ALD:副腎白質ジストãƒãƒ•ã‚£ãƒ¼ã€�X連鎖潜性é�ºä¼�）#adrenoleukodystrophy 発症直後(å°�å¦æ ¡å…¥å¦ç›´å‰�)ã�®è‡�帯血移æ¤�ã�¯ç”Ÿç�€ã�›ã�šã€‚å�¥å¸¸å…�→é‡�症心身障害者（é�·å»¶æ€§æ„�è˜éšœå®³ã€�ã�ã�Ÿã��ã‚Šã€�胃瘻ã€�在宅療養22å¹´ç›®) ALDã�¯æ—¥æœ¬ã�§ã�¯é›£ç—…ã�§ã�™ã�Œã€�欧米ã�§ã�¯æ–°ç”Ÿå…�スクリーニングã�¨é€ 血幹細胞移æ¤�ã�§ç™ºç—‡è‡ªä½“を予防
Toni94 @Toni9411542813
3 Followers 540 Following
Kostas @rodrigocalima
637 Followers 4K Following Executive Producer of the film 90 DAYS, BURDEN, All Boys Aren’t Blue
Jesse Torrey @JesseTorrey
66 Followers 123 Following I'm just a special mom who feels pretty normal.
Bob Wyborn @BobWyborn
92 Followers 232 Following To provide Research, Resources & Holistic Support for all those affected by any of the Leukodystrophies
Mad Stork @MadStork3
113 Followers 342 Following
Phillip A Richmond @Phil_A_Richmond
589 Followers 775 Following Bioinformatics PhD. Follow the science wherever it leads you.
Krzysztof Gajewski @gajewskik_
71 Followers 554 Following
National Coordinating... @NCCRCG
984 Followers 901 Following Join us for the 5th Annual Public Health Genetics and Genomics Week from May 20-24. #PHGW #PublicHealthGenetics #PublicHealthGenomics Retweet/likes≠endorsement
James Meacham @james_a_meacham
379 Followers 1K Following Que Sera, Sera. Family, food, cycling. Got no time for negative people....ðŸ�´ó �§ó �¢ó �·ó �¬ó �³ó �¿ Proud of my brave 🌟 in the sky 💙
Living in the Light @stayhomeforrare
126 Followers 253 Following #IStayHomeForRare join us in solidarity with those staying home protecting the lives of children, family members, and friends living with rare diseases.
Paul Orchard @paulmdmn
70 Followers 650 Following
Solving X @SolvingXorg
98 Followers 228 Following An organization on a mission to eliminate #Adrenoleukodystrophy (#ALD). A community of women, men and children who are affected by the rare disease.
Julie Purschke @JuliePurschke
61 Followers 168 Following
Rare Advocacy Movemen... @RareAdvocacy
3K Followers 1K Following Network of people with #RareDisease #LivedExperiences dedicated to evolving the #LivingRare experience into opportunities for the global community to thrive.
Joanne @nevergiveup7703
5 Followers 169 Following
Brians Hope CT @BriansHopeCT
301 Followers 428 Following Through Brian’s Hope, a 501(c)(3) charitable foundation, we look forward to when no child experiences the devastation of adrenoleukodystrophy (ALD)
Kayla J. Muirhead, Ge... @KaylaJordan_GC
35 Followers 16 Following Hi! I am a genetic counseling student at Stanford pursuing my thesis on ALD caregiver quality of life for families whose children screen positive on NBS.
Probably Genetic @ProbGenetic
596 Followers 751 Following Rare genetic conditions can take years for doctors to diagnose. #ProbablyGenetic is a personalized healthcare company working to help you find answers.
Remember The Girls @remember_girls
2K Followers 766 Following Nonprofit organization aiming to break the stigma facing females impacted by X-linked conditions. #NotJustCarriers
PJ Coë @pj_coe
157 Followers 590 Following Author, commentator, fan of most things European, many things American, shared histories, good writers, speakers – and Fulham FC.
Adrenal Alternatives ... @AdrenalAdvocate
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Rare Diseases & Disab... @raddafoundation
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DNADVENTLifesciences @dnadvent
68 Followers 257 Following
RareChannels @RareChannels
472 Followers 3K Following #DisruptionIsHere #TheSpectrumOfConnections #ConceptToCure #FindAndBeFound #B2B https://t.co/4UEi1CS6ez
Robin Communications @robin_comms
19 Followers 114 Following Helping businesses communicate proactively & consistently. Specialised in #ScienceCommunications & #ProjectManagement especially in #bioeconomy & #healthcare
Hassan Suraw @hassan_suraw
66 Followers 792 Following News Local News Sports International Technology News Football World News All Sports Government & Politics Government International Politics Life & Style
Cassandra Pio @PeaAngel2000
22 Followers 354 Following Mommy to an #ALDWarriorAngel #ALDWarrior and #ALDAdvocate Aunt to an #ALDWarriorAngel #ALD #ALDonNBS #SaveTheBoys
JAN HALL @JANHALL83665498
12 Followers 109 Following I'm a mom and grandma and they got me hook on pokemon and I love it want one of all I'll help you you help me want be friends
RareMD | Undiagnosed? @RareDiseaseDDx
2K Followers 4K Following Undiagnosed? Enter symptoms in free RareLook, see which of 4,174 rare diseases match, share with your doctor, who gets free RareMDx. Not a diagnosis.
UAE Rare Disease Soci... @UAERDS
813 Followers 1K Following الØساب الرسمي لجمعية الإمارات للأمراض النادرة The official account of the United Arab Emirates Rare Disease Society #UAERDS
Care Beyond Diagnosis @Carebeyondd
124 Followers 105 Following Care Beyond Diagnosis supports patients, families, and communities after a rare disorder diagnosis through innovative and unique programs.
MedicsforRareDisease @MedicsForRare
5K Followers 2K Following This account is no longer active, please continue to follow our work on Instagram and Bluesky! @medicsforrare
Beacon for Rare Disea... @RareBeacon
12K Followers 10K Following Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
Sarah Axelrath, MD @DrSarahAxelrath
15K Followers 3K Following #Homelessness and #harmreduction �💉
Cure MLD @cure_mld
109 Followers 163 Following We are on a mission to #cureMLD, a #lysosomalstoragedisorder (LSD) & #leukodystrophy impacting kids & adults. #genetherapy #advocacy https://t.co/AlcnvCedda
Chris @5Aftermidnite
656 Followers 616 Following
Arpan Patel, MD PhD (... @ArpanPatelMD
2K Followers 2K Following Hepatologist/researcher @UCLAHealth and @LosAngelesVA. Product of: @MountSinaiLiver|@dgsomUCLA|@PennMedicine. Promoting #palliativehepatology. All views my own.
NA @nicadler
23K Followers 687 Following
Kavit Shastri @kavit_shastri
273 Followers 638 Following Medical student Physics fanatic I play harmonica occasionally
MRK DRTY @MRKDRTY007
1K Followers 1K Following I love baseball. 16.5 years sober from alcohol and opiates, I have Addison’s disease. #RecoveryPosse #RIPDave
Raremark @RaremarkHealth
1K Followers 578 Following Helping you better understand, manage and talk about rare disease. Join us at https://t.co/QfQK9hoRXm
Ang Yugto @angyugto
1 Followers 0 Following We sell socks. 50% of the proceeds go to Zed, a child suffering from ALD. ◾Hugotology ◾Mobile Gaming ◾General Blog ◾Ahenteng Gigil
Chris Giza @griz1
5K Followers 1K Following family man👪, friend of facts🔎, brain doc🤕, scientist🔬, cyclist🚴�♂�, happy camper�, traveler🛫, mountaineer�, mr. map🌎, optimist�
Radhika Dhamija, MD, ... @NeurogenesDr
807 Followers 423 Following momX2, Geneticist&pedsneuro @mayoclinic,Med school @aiims_nd
Genetix Biotherapeuti... @genetix_biotx
10K Followers 717 Following We’re transforming lives through curative #genetictherapies - building a future of lasting hope for patients and families. https://t.co/1dUPTEWcyx
Hunter's Hope @HuntersHopeFDN
3K Followers 21 Following Working toward treatments and a cure for Krabbe & Leukodystrophies, advocating for newborn screening and supporting those affected by these diseases.
Olivia D’Annib... @ODAnnibalePhD
77 Followers 101 Following Clinical Biochemical Genetics Fellow, Human Genetics PhD, trying to help the kiddos with metabolic disorders 🔬🧬🧪
Jesse Torrey @JesseTorrey
66 Followers 123 Following I'm just a special mom who feels pretty normal.
Merche SerranoGimarÃ... @SerranoGimare
524 Followers 227 Following Child neurologist working on rare diseases at H Sant Joan de Déu, Barcelona. Working for CIBERER, IPER & https://t.co/vcgJhucufm. Views are my own.
Matt Lieberman @social_brains
37K Followers 4K Following UCLA Neuroscientist (https://t.co/heXcTOvnNd), Co-founder of https://t.co/UIIdXBmdqh, Substack https://t.co/jVnoBXykYz
Bob Wyborn @BobWyborn
92 Followers 232 Following To provide Research, Resources & Holistic Support for all those affected by any of the Leukodystrophies
National Coordinating... @NCCRCG
984 Followers 901 Following Join us for the 5th Annual Public Health Genetics and Genomics Week from May 20-24. #PHGW #PublicHealthGenetics #PublicHealthGenomics Retweet/likes≠endorsement
Sam VWM @SamvsVWM
164 Followers 81 Following Sam suffers from a very rare, terminal brain disease called Vanishing White Matter Disease (VWM)
James Meacham @james_a_meacham
379 Followers 1K Following Que Sera, Sera. Family, food, cycling. Got no time for negative people....ðŸ�´ó �§ó �¢ó �·ó �¬ó �³ó �¿ Proud of my brave 🌟 in the sky 💙
Danny Organista-Casil... @Organista24
860 Followers 3K Following Engineer & Baseball Geek. Larger than life dreams, hard worker, life apprentice. Young man, Old Fashioned Soul. #SmartBaseball #CommitmentToExcellence 다니엘.
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589 Followers 775 Following Bioinformatics PhD. Follow the science wherever it leads you.
ACMG @TheACMG
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Kayla J. Muirhead, Ge... @KaylaJordan_GC
35 Followers 16 Following Hi! I am a genetic counseling student at Stanford pursuing my thesis on ALD caregiver quality of life for families whose children screen positive on NBS.
Julie Purschke @JuliePurschke
61 Followers 168 Following
Justin @ALD_Daily
116 Followers 193 Following 36 year old with Adrenoleukodystrophy and Addison's Disease. Tweeting about my illness to show others they are not alone.
Rare Disease Report @RareDR
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177 Followers 151 Following Leukodystrophy Australia - supporting the Long Walk across Australia for Leukodystrophy
ULF @UlfUnited
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Adrenal Diseases ðŸ... @Addisons_and_AI
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Run for ALD @RunforALD
79 Followers 51 Following
Cassandra Pio @PeaAngel2000
22 Followers 354 Following Mommy to an #ALDWarriorAngel #ALDWarrior and #ALDAdvocate Aunt to an #ALDWarriorAngel #ALD #ALDonNBS #SaveTheBoys
Solving X @SolvingXorg
98 Followers 228 Following An organization on a mission to eliminate #Adrenoleukodystrophy (#ALD). A community of women, men and children who are affected by the rare disease.
EURORDIS-Rare Disease... @eurordis
31K Followers 1K Following An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
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Addison's Disease Sel... @AddisonsUK
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AddisonsDisease UK @Addisons_UK
489 Followers 27 Following For all those with Addisons Disease in UK or supporting those with Addisons Disease. (Please tweet to confirm for follow back)
Beacon for Rare Disea... @RareBeacon
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MedicsforRareDisease @MedicsForRare
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RARE Revolution Magaz... @RareRevolutionM
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karen harrison @karencamsmum
78 Followers 151 Following mum to 2 wonderful sons, Cameron and Glenn, project manager for the charity Ald Life the charity for Cameron's illness, Adrenoleukodystrophy
ALDConnect @ALDConnect
527 Followers 412 Following Consortium of advocates and experts advancing care for #adrenoleukodystrophy (#ALD) and #adrenomyeloneuropathy (#AMN) through innovation and collaboration.
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