'Official Selection' - DISABLED ARTIST SHOWCASE: Creating Our Spaces
#disability #disabled #filmmaker #sma #cerebralpalsy #inclusion #bronx @smamyway_us @smamyway Genentech #raredisease #raredisease s

Gastrointestinal Tract Complications Infographic #Scleroderma AwarenessMonth 🌻
blog.raynaudsscleroderma.co.uk/2018/05/gastro… #Scleroderma FreeWorld #Raynauds FreeWorld
#Research #Scleroderma #SystemicSclerosis #Raynauds #Autoimmune #RareDisease #NoCure #UnknownCause #LifeChanging #ConnectiveTissue #SSc

Identity V Tournament NAEU 2023 Day2
Dear Visitors,
Check out day 2 of IVT NAEU 2023
Match 1: B4U vs YHB 18:00 EST
Match 2: CH4 vs RV 20:00 EST
Match 3: TBD vs TBD 22:00 EST twitter.com/i/broadcasts/1…

Dolar ile alınan ilaçlar piyasada yok!
Hastalar olarak tedavimiz aksıyor!!!
#dolar #saglik #nadirhastaliklar #RareDisease

Check out this Sib Advice Saturday from Daron. Do your best to carve out individual time for each of your children's interests. Your presence courtside, in the audience, at tournaments, or wherever their interest may take them is something they will always cherish. #raredisease

Jordi Antón and Belot Alexandre present the outcomes from yesterday's Education Working Group meeting at _ERNRITA General Assembly.
Exciting times ahead!
EURORDIS-Rare Diseases Europe #RareDisease #vasculitis

🧬Inborn Error of Immunity⚠️
🆕-ly described 'IRF2BP2' mutation :
➡️ recurrent🦠infections; fevers; GI;
autoimmune🧠encephalopathy; +
readcube.com/articles/10.33… #snrtg streamachine retweets 🇬🇧 #autoimmune
#RareDisease
#immunology

#genechat What resources are you providing when giving a diagnosis? Are you physically handing parents anything? I created a list of general rare resources to go along with specific diagnosis resources. This gives parents options of where to turn for support! #raredisease

Julie Power presents the patient journey at _ERNRITA General Assembly.
#patientjourney VIA #vasculitis #RareDisease

Him.Rare Disease family moving towards rare awareness
#HealthForAll #raredisease
#SpinalMuscularAtrophy
#spinalmuscularatrophy World Health Organization (WHO) #HealthierTogether #G20India
Sukhvinder Singh Sukhu #DMD Ministry of Social Justice & Empowerment, GOI Divyang Empowerment DD News CNN Breaking News
Ministry of Health
23/06/2023

Avengers coming... Who's your Marvel Entertainment hero? #AORUSUnleashed AMD Gaming

Enter to win this custom AMD Ryzen X670E motherboard, AMD Radeon RX 7900 XTX graphics card, and monitor set: gigabyte.com/us/aorus-unlea…

We wonl for our short film
DISABLED ARTIST SHOWCASE: Creating Our Spaces.
#disabled #film maker #disabilities #director #bronx #sma #cerebralpalsy #raredisease #raredisease s #film #festival #awardwinning DISORDER: The Rare Disease Film Festival

The genomic profiles of patients with #Cholangiocarcinoma , who are 45 years of age and younger, are different than that of patients older than 45 years of age, found a new study published in the journal Cancer Biology and Therapy.

➡️ Read more: fal.cn/3zm2N

There are voices that will continue try to discredit patient voice. To suggest that we don't understand data. To belittle our level of education, our ability to understand evidence and to make well reasoned decisions.

Those voices won't win. And history will judge them.
#Karma

#Hypoparathyroidism is a #raredisease resulting from a deficiency of parathyroid hormone (PTH) in the body & can be linked to several multiorgan manifestations, including cardiovascular, respiratory & renal complications.

Learn about hypoparathyroidism: buff.ly/467lqBH

I tested 'America's Best Pillows' for a week each. Here's what happened to My Body.

Very happy to talk about Decentralized trials at the #EURORDISOpenAcademy 2023 with such an engaged group of #RareDisease #patientadvocates !

Amazing to meet others with #superficialsiderosis . #RareDisease patients from different parts of the U.K. coming together. Huge thanks to Suzy. SSRA | Living with SS

1 in 10 Americans are affected by a #RareDisease . Holy Cross Football is hosting a Lift for Life in support of Uplifting Athletes’s mission to bring hope and inspiration to those impacted by a rare disease. Make a donation or pledge your support as we lift on June 27:
pledgeit.org/holy-cross-foo…

Do you have lived experience of #RareDisease ?

Would you like to share your insights and experiences to help prioritise and shape #clinicaltrials for rare diseases in Ireland?

If so, we'd love to hear from you!👇

#PPI #PatientandPublicInvolvement #RareDisease ClinicalTrials

Exciting news, Caddies! Enjaymo is now approved in the UK. You might want to discuss this treatment with your doctor. Many patients in the US have used it successfully. #CADForg #coldagglutinin #raredisease #enjaymo

Impressive, 🆕 results from the
Mayo Clinic 'UnDXd' 🧬Rare Disease program
…nslational-medicine.biomedcentral.com/articles/10.11… Blazed #bioinformatics streamachine retweets 🇬🇧 #itrtg
#Genomics
#raredisease

When somebody is dying...
they know when a drug helps them live!

#BelieveThem

#patients #patientadvocacy #patientrights #ALS
#mybodymychoice #Parkinsons #RareDisease

The 1st #undiagnosedhackathon was a great success with finale of Coat of Arms designed by the participants from Japan! Looking forward to seeing all in Georgia in October 22-23 for the 12th #UDNI meeting, registration link will be opened soon Wilhelm Foundation Udninternational #raredisease