Sunflowers growing in Nantwich during The Big Sunflower Project 2023.
#TheBigSunflowerProject #Sunflower #Sunflower s #GrowASunflower #SowGrowShow #LetItGrow #CentronuclearMyopathy #MyotubularMyopathy #CentronuclearMyopathies #RareDisease #RareDisease #RareDisease s

IORD congratulates ISRO on the incredible milestone achieved in India's space journey with the momentous
lunar landing of Chandrayaan-3 on the Moon's South Pole.
#Chandrayaan3 #IndiaOnMoon #isrochandrayaan3mission
ISRO
PMO India
Narendra Modi

Number 17 is SO scary!! 😱

We are an 'Official Selection' DISABLED ARTIST SHOWCASE: Creating Our Spaces #disabled #filmmaker #director #disabilities #Inclusion #sma #cerebralpalsy #strokesurvivor #rarediseases #bronx Genentech DISORDER: The Rare Disease Film Festival Keith Jones Leroy Moore Dom Evans #sma community

Sorry to see anyone die, but when a member of the COVID AdCom Committee is stating that an obvious toxin is 'Safe', I am pleased to see that they took their own advice. Result - the expert died. Dr. Marks did send his condolences.

Minnesota Minnesota Twins center fielder Michael A Taylor is raising money for the #RareDisease community this MLB season in support of Uplifting Athletes! He is honoring his sister, who was diagnosed with #Trisomy18 .

Donate to Taylor's campaign here: bit.ly/3MDM79J
#WeTackleRare

DISABLED ARTIST SHOWCASE: Creating Our Spaces
Festival Screening @ Freedom Festival International
#Disabled #filmmaker #strokesurvivor #sma #cerebralpalsy #sma community #rarediseases Genentech DISORDER: The Rare Disease Film Festival #inclusion Keith Jones Dom Evans Leroy Moore ❤TheRealToniHickman❤

DISABLED ARTIST SHOWCASE: Creating Our Spaces Festival Screening @ Freedom Festival International #Disabled #filmmaker #strokesurvivor #sma #cerebralpalsy #sma community #rarediseases
Genentech

DISORDER: The Rare Disease Film Festival

#inclusion
Keith Jones

Dom Evans

Leroy Moore

❤TheRealToniHickman❤

In our next #MentalHealth webinar, experts come together to understand the uncertainties and trauma associated with #RareDiseases , and identify coping strategies and training needs.

Book your place now!
👉 go.eurordis.org/a2vlPq

Rareminds Medics4RareDiseases Global Alliance of Mental Illness Advocacy Network

We are an 'Official Selection' DISABLED ARTIST SHOWCASE: Creating Our Spaces #disabled #filmmaker #director #disabilities #Inclusion #sma #cerebralpalsy #strokesurvivor #rarediseases #bronx
Genentech
DISORDER: The Rare Disease Film Festival
Keith Jones
Leroy Moore
Dom Evans
#sma community

Grateful to FIRST for investing in UW Medicine (@SimpsonLabUW) 's Twitter Profile">Simpson Lab UW Medicine UW Medicine to build on our recent work on #DarierDisease : insight.jci.org/articles/view/…. Grants from patient-focused foundations like FIRST are key to advancing research that can change the way we diagnose and treat NORD.

For #NationalPatientAdvocacyDay , read from our community member Kerry, who lives with and writes about #sarcoidosis and is working on an exciting book project that YOU can be a part of!

Read: bit.ly/3ElOsAZ

Sunflowers growing in Moorsholm during The Big Sunflower Project 2023.
#TheBigSunflowerProject #Sunflower #Sunflower s #GrowASunflower #SowGrowShow #LetItGrow #CentronuclearMyopathy #MyotubularMyopathy #CentronuclearMyopathies #RareDisease #RareDisease #RareDisease s

Collin Rugg It's your funeral ⚱️

Our R&D team is committed to finding a treatment to help people living with spinal muscular atrophy ( #SMA ). Join us this month in raising awareness of this debilitating disease that impacts approximately 10,000-25,000 people in the U.S.: fal.cn/3AoOR #SMA AwarenessMonth

WE HERE!
DISABLED ARTIST SHOWCASE: Creating Our Spaces.
#filmmaker #disabled #bronx Leroy Moore
#disabled #disabilities #cerebralpalsy #strokesurvivor #sma #rarediseases #sma community #inclusion
#sma community #awardwinning Dom Evans Tyler Perry Tyler Perry Studios Issa Rae

Sunflowers growing during The Big Sunflower Project 2023.
#TheBigSunflowerProject #Sunflower #Sunflower s #GrowASunflower #SowGrowShow #LetItGrow #CentronuclearMyopathy #MyotubularMyopathy #CentronuclearMyopathies #RareDisease #RareDisease #RareDisease s

Have you or a loved one in the #RareDisease community been affected by the recent fires in #Hawaii ? NORD is proud to offer a Hurricane & Natural Disaster Emergency Relief fund that can help pay for repairs, temporary lodging, and more.

Apply here: bit.ly/45yyezS

DISABLED ARTIST SHOWCASE: Creating Our Spaces Festival Screening @ Freedom Festival International #Disabled #filmmaker #strokesurvivor #sma #cerebralpalsy #sma community #rarediseases

DISABLED ARTIST SHOWCASE: Creating Our Spaces. We here screening at the Freedom Festival. The Fun begins. #filmmaker Keith Jones Dom Evans Leroy Moore #disabled #disabilities #cerebralpalsy #strokesurvivor #sma #rarediseases Genentech #sma community ❤TheRealToniHickman❤

Proud to announce Cory Simpson, MD, PhD, FAAD (he/him) has received a $50k award from FIRST to support UW Medicine (@SimpsonLabUW) 's Twitter Profile">Simpson Lab UW Medicine personnel, & provide supplies for research aimed at defining the pathogenic mechanisms of #Darierdisease & discovering new treatment strategies. UW Medicine ISCRM at UW

Take advantage of these resources to have more informed conversations about myeloproliferative neoplasms (MPNs) with your Healthcare Professional. Register for patient and caregiver support resources today.

NORD has added a new report on #WDR26 -related disorder, also known as Skraban-Deardorff syndrome ( #SKDEAS ), to our #RareDisease Database, written by the physician researcher who published about the first series of patients with the condition. Read it here: bit.ly/3KJnneq

Few days left to apply! Don't miss the opportunity to get in our
MarieSkłodowskaCurie
consortium✨PhD position #9 is vacant and the application process is OPEN until August 31st, 2023! Michiel Vermeulen Lab! #chromatin #rarediseases #epigenetics