Rare Disease Foundation

Register at http://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

Here is part 3/3 of our Rare Disease Noteworthy Dates Calendar of 2024, featuring important rare disease awareness and advocacy dates from September to December. Let's keep the conversation about rare diseases going! If you missed part 1 of this series (which includes dates up to May), you can find it on our feed or pinned on our Instagram page.  🤔 Have we missed any? Let us know in the comments! #rarediseases #rarediseaseawareness

Here is part 2 of 3 of our Rare Disease Noteworthy Days Calendar of 2024 from June-Aug. We've gathered some important awareness and advocacy days and months to keep the conversations about rare diseases going. Thank you ALL for the great engagement in our last post. 🤔 Have we missed any? Let us know in the comments! If you missed Part 1 of this series where we featured rare disease days from March-May, you can it on our page!

🚨 Hello Canadian rare disease caregivers! 🚨 Researchers at the UofM need your help - there is only 5 more days to participate in this study on your experiences as a caregiver in Canada. See original post below for more information ⬇ or visit https://lnkd.in/gDywyA5A to complete the pre-screening survey.

Rare Disease Day 2024 may be over, but there are lots of opportunities to celebrate, advocate, and raise awareness for rare diseases for the rest of 2024! In the coming weeks, we will be sharing a month-by-month calendar breakdown of some notable rare disease days - starting with our first set from March-May here! Please share and save to keep these on your radar! Did we miss any dates? Let us know in the comments. #rarediseaseday #raredisease #rarediseasefoundation #rarediseaseawareness

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. Follow us on Instagram for more @rarediseasefdn #raredisease #rarediseases #rarediseaseday #rarediseaseawareness #caregivers #caregiversupport

Hello rare disease community! 🦓 Researchers at the University of Manitoba are surveying the experience of caregivers of children with rare genetic diseases in Canada! Canadian caregivers are still hugely understudied in the rare disease community despite the fact that they contribute so much and have such unique experiences. This study aims to better understand the diagnostic journey from the caregiver perspective and how to better support caregivers from all backgrounds across the country. How you can help: 1. Fill out this prescreening survey (redcap.link/rd-caregiver) to determine if you are eligible for the study. If you are eligible, the study survey will take 15-20 minutes to complete online. 2. Share this opportunity with others in your circle! We need to reach as many Canadian caregivers as we can to best understand the experience, needs, and preferences of caregivers! All study materials are also available in French and simplified Chinese. *Please note that your child does not need to have a confirmed molecular diagnosis to participate, as long as they have gotten a genetic test after 2018! VUS/Uncertain results are welcome. See poster below 👇 for more information! Or reach out to Vivien directly at truongv2@myumanitoba.ca with any questions.

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, but it includes many more types of care too. So what is pediatric palliative care? It is the total care of the child’s body, mind, and spirit, and includes family support, which can begin at the time of diagnosis and continue alongside disease directed treatments. Research has suggested that pediatric palliative care may be associated with improvements in quality of life, symptom control, communication, perceived support, reduced time in hospital, less invasive treatment, and greater advance care planning. Specialized pediatric palliative care is a relatively new field and there are a growing number of healthcare teams and institutions offering this type of care across Canada. Specialized pediatric palliative care can be a relevant additional layer of healthcare support for children with serious rare diseases and their families. 📢 Reminder: tomorrow is the last day to join the What Matters Most study to improve pediatric palliative care! Visit https://lnkd.in/eN7A7kk8 for more information. #pediatricpalliativecare #raredisease

Rare Disease Foundation is looking for a new board Secretary and Treasurer to safeguard and grow the organization as we turn toward the future under the leadership of new board chair, Dr. Bruce Carleton. We will continue to offer our signature microgrants, mental health support and Peer2Peer Resource Group programs as well as work on the expansive vision Dr. Carleton brings.  If you are someone who cares for rare, wants to give back, wants to build our community and has an eye for detail, we would love to hear from you.  Please reach out if you’re interested in discussing further.

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