Have you ever wondered about what makes a rare disease? 🧐 Do you or a family member have a rare condition?🧬 Learn more about the Rare Disease Foundation by visiting our profile or rarediseasefoundation.org

📢ATTN: Canadian caregivers of children with rare disease! Help researchers at the University of Manitoba understand your experiences, needs, and preferences while navigating the diagnostic journey for your child! See poster⬇️for more info & retweet to share this opportunity!

The Rare Disease Review at Western University invites RD patients and families to submit their artwork that reflects their experience with rare diseases! Your artwork will be used to raise awareness of rare diseases. (Deadline on December 17.) See poster for more information ⬇️

📢 Study Alert! Are you a family member of a child with a serious illness, or a healthcare professional involved in palliative care for children? Help identify the most important criteria of high-quality #PediatricPalliativeCare. ➡️Learn more: kimwidger.ca/what-matters-m…

The Rare Disease Foundation wishes you and your families a safe, restorative, and joyful holiday season! ❄️

‼️Only 10 days left to participate in this study on #pediatricpalliativecare #PalliativeCare

Pediatric palliative care is often misunderstood to mean solely “end-of-life care” or “hospice care.” Pediatric palliative care can include end-of-life care and hospice care, and many more types of care too. So what is pediatric palliative care? See below for more👇

🗣️ Please repost! Study opportunity for Canadian caregivers of children with rare disease! Participate in this survey about your needs, experiences, and preferences by going to redcap.link/rd-caregiver #RareDisease #RareDiseaseDay #Caregiver

There are only 8 more days until Rare Disease Day! Wondering how you can support your friends/family affected with rare disease? Here are 4 practical tips to show you care. #raredisease #rarediseases #rarediseaseday #rarediseaseawareness #caregivers #caregiversupport

#rarediseaseday2024 may be over, but there is no shortage of opportunities to raise awareness for rare diseases this year. In the coming weeks, we will be sharing some notable rare disease dates throughout the year - stay tuned for more! #raredisease

Here is part 2/3 of our Rare Disease Days Calendar for 2024. We've put together some noteworthy awareness days from June-August to keep the conversation about rare diseases going! If you missed part 1, visit our page for noteworthy days from March-May! #raredisease

Register at bit.ly/NARDS2024 to see our Chief Medical Officer Millan Patel on the Accelerating the Path to Orphan Drug Development, innovative Gene Therapy and Genomics panel at Bamberg Health’s 2024 North America Rare Disease Summit! #NARDS

Project Rare and UnDiagnosed is currently seeking parents/caregivers of children with rare diseases and undiagnosed medical conditions to participate in an anonymous 20-30 minutes survey online! #raredisease #rarediseaseawareness #researchstudy

It’s #RareChromoDay! Rare Chromosome Disorder Awareness Day celebrates those living with a rare chromosome/gene condition + their families and caregivers! Wear blue and yellow today to show your support and check out rarechromo.org/rarechromoday/ for more ideas on how to get involved!

Today, we celebrate World Fragile X Awareness Day!

Today, we are celebrating World Turner Syndrome Awareness Day!

Today, we celebrate Sotos Syndrome Awareness Day! #raredisease #sotossyndrome #genedisorder

Today, we celebrate World Duchenne Awareness Day! #raredisease #Duchenne #duchennemusculardystrophy

Today, we celebrate Bardet Biedl Syndrome Awareness Day! #raredisease #bardetbiedlsyndrome

Today, we celebrate Phelan-McDermid Syndrome Awareness Day! Swipe to learn more + some helpful resources! #raredisease #phelanmcdermidsyndrome #PMSAD