#RareDisease #CareAboutRare #RareSiblings

As today's #nationalsiblingsday we're thinking about all those brilliant people growing up with a brother or sister who has a rare chromosome or gene condition, to let them know how amazing they are. Our guide to supporting siblings is free at rarechromo.org/disorder-guide…

It's National Siblings Day! Join Sibs in celebrating today. Why is #NationalSiblingsDay important? - Siblings who grow up with a disabled brother or sister often spend a lot of time coming second to the needs of another. Find out more about at sibs.org.uk/nsd

#SiblingsDay is special in the #SYNGAP1 community! Here is a special post from a sibling caregiver. Syngap.Fund/SibCare Thank you to all our Siblings! Visit Syngap.Fund/Sibs

Thinking of all the #raredisease siblings on National Siblings day. These are some words often used to describe siblings of individuals with rare diseases. What word best describes a sibling in your life?

This weekend we hosted the annual Ohio Sib’s conference. Such a great turnout and so much valuable information shared! #siblings #disability #raredisease

So excited to add a 5th sibling workshop to my calendar for this summer! I love running these workshops and watching siblings connect. Angelman, EFTUD2, Polymicrogyria, SATB2, SCN2A families, make sure you sign your child (sibling) up for the sibling workshop at the conference!

Talking about SibShops at the Ohio Association of County Boards of DD Conference! #sibling #sibshop #disability

authors.elsevier.com/c/1jF7339uenmu… Full article pedneurojournal McMaster University Department of Pediatrics

The LEAP into Advocacy Virtual Summit is an opportunity to hear about the latest rare disease innovations in patient advocacy, public policy, mental health and more! This event is approved for 3 CEUs. Learn more and register at buff.ly/44e84ln

Thank you Effie Parks for having me on Effie Parks (effieparks.com) to talk all things genetic counseling and testing! Make sure you listen to this episode, and subscribe to Once Upon a Gene! 🧬 #raredisease #genechat

One week until our annual LEAP into Advocacy Virtual Summit! The theme: Innovation and Collaboration: Charting the Path Forward for Rare Disease Advocacy. Register buff.ly/3VPUqDo View the agenda buff.ly/4abn9XP Meet the speakers buff.ly/3RD5Jwe

Starting off conference season with the MFDM family conference. These siblings were amazing! Thank you MFDM for letting me run a sibshop! If your org is planning a conference and wants to include siblings, feel free to reach out! #raredisease #genechat

Thank you The E.WE Foundation for inviting me to speak at the Leap Into Advocacy Summit! I loved getting to share the importance of supporting siblings. The more we talk about siblings, the more awareness we’ll create. Let’s keep the conversation going! #raredisease #genechat

Much needed vacation to the wildflowers of Colorado 🌸 #Colorado #goldendoodle #dogs

Today is World Brain Day! Let's promote awareness and education about neurological disorders like epilepsy. You're not alone. Together, we can make a difference! Learn more about epilepsy: epilepsy.com/what-is-epilep…

This summer I had the incredible opportunity to present to families about the impact on siblings and run workshops for siblings of all ages at five conferences! Are you hosting a conference in 2025? I’d love to talk about opportunities for siblings. #genechat #raredisease

I’m starting a new, virtual Sibshop for siblings 6-11 years old in Ohio. All siblings (6-11 years old) are welcome, but we hope to reach siblings of individuals with rare diseases/genetic conditions. If you are interested, please fill out this survey: forms.gle/gYDyUp5erQZLaA…

We are preparing for our annual Ohio Siblings Network Gala! The Gala raises funds to support our mission to empower siblings and advocates to create a better world inclusive of people with disabilities. #disability #sibling #nonprofit #raredisease #glasschildren #sponsor

Do you know an amazing peds PT/OT/ST? I run monthly virtual sibling support groups for siblings of individuals with rare diseases (6-11 yr), and they have questions about what happens in therapy. I’d love to have therapists to join our group and talk to the sibs. #raredisease