Rare Disease Network

From patients and families, to students and teachers, providers and advocates, we believe every rare voice matters

[Rare Disease Network @RareCareNetwork]

Remember to join us at 7 pm for our rare disease day talk! https://t.co/K63Sj0HnYG

[Rare Disease Network @RareCareNetwork]

Join us tonight at 7 pm on Facebook to honor the story of one woman who has worked in many areas of the rare disease community, including as a parent, researcher, and medical professional. We hope to learn together, ask questions, and offer support to our rare disease community.

[Rare Disease Network @RareCareNetwork]

Today is Rare Disease Day, a globally-coordinated movement working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.

[Rare Disease Network @RareCareNetwork]

Join us today as we talk with various experts about care collaboration and how to individualize and organize a multi-care specialty team for your child with a rare disease. Jennifer Swets shares about adapting therapies to the individual child (https://t.co/zZ7NamZW7i).

[Rare Disease Network @RareCareNetwork]

Today we are highlighting researchers in West Michigan who study rare diseases. Visit our event website (https://t.co/tFCHhqryhD) to hear them talk about why they study rare diseases and what families should know about their research. #RDNfamily

[Rare Disease Network @RareCareNetwork]

Today we want to talk about the role of your primary care physician in coordinating complex care. If you have questions about this topic, be sure to let us know by commenting on this post or on the YouTube video. https://t.co/V8r4SkYEB4

[Rare Disease Network @RareCareNetwork]

Our first content for rare disease day is now live on our website! Be sure to check out our video on genetics and privacy from the Spectrum Health. We also have a kids video about how many people are affected by rare disease (it's more than you think!). https://t.co/tFCHhq9WT3

[Rare Disease Network @RareCareNetwork]

Our own Dr. Bupp was recently on Wood TV to talk about Rare Disease Day. He shares about challenges faced by families affected by rare disease and how we can help provide resources and connections to help people move forward. https://t.co/43WeAHOzij

[Rare Disease Network @RareCareNetwork]

Only 11 days until rare disease day! Be sure to check out our free live event on rare collaborations: https://t.co/WIl8EPSB4T #RDNfamily #rarediseasenetwork #raredisease #rarediseaseawareness #careaboutrare

[Rare Disease Network @RareCareNetwork]

Did you know that the experience of being rare is actually quite common? Here is a preview of some content for Rare Disease Day 2022. This video helps families with children explore what we mean by ‘rare’ when we talk about rare disease. #rarediseasenetwork

[Rare Disease Network @RareCareNetwork]

We are excited to have Brandi J. Berry, LLMSW, working with us on new content. She is the Program Coordinator for Children’s Special Health Care Services. Brandi has a passion for public health and lived experience as the parent of a child with a rare disease. #rarediseasenetwork

[Grand Rapids Griffins @griffinshockey]

We will host our first-ever Mental Health Awareness Night & become the first AHL team to participate in the Hockey Talks campaign on Saturday, Feb. 26. This game will also be sensory friendly, with decreased auditory and visual stimulations.

Details >> https://t.co/ChGEuLN2II

[Rare Disease Network @RareCareNetwork]

What is it like to be a rare disease researcher? Who does a rare disease researcher work with and what kind of problems do they solve? We will answer these questions with our new content that will be released on https://t.co/be8npS2vbP on 2/24. #rarediseasenetwork

[Rare Disease Network @RareCareNetwork]

On 2/26 we will discuss care collaboration, which includes individualizing and organizing a multi-specialty care team. We will talk with a behavior analyst and a school administrator about the necessity of adapting therapies and educational approaches to each individual child.

[Rare Disease Network @RareCareNetwork]

Care coordination assistance is helpful for families faced with rare diagnoses because multiple specialties are often involved. On 2/23, we will examine the process of coordinating complex care for rare conditions with a local pediatric primary care provider. #rarediseasenetwork

[Rare Disease Network @RareCareNetwork]

Caleb will be coordinating all our new content on health literacy. Recently, he helped describe a new treatable genetic syndrome caused by ODC1 mutations now termed Bachmann-Bupp syndrome. Caleb has been integral in the work of founding and establishing the mission of the RDN.

[Rare Disease Network @RareCareNetwork]

What do you want to know about health literacy? Reply to this post with your questions and we’ll do our best to incorporate them into our new content. #RDNfamily #rarediseasenetwork #raredisease #rarediseaseawareness #careaboutrare

[Rare Disease Network @RareCareNetwork]

When it comes to rare diseases, understanding is power. When it comes to health information, privacy is important. On 2/22, our new content will discuss aspects of rare disease, genetics, and public health – what protections are in place, what risks exist, and how to be prepared.

[Rare Disease Network @RareCareNetwork]

As part of our rare disease week events, we will get to hear from Dr. Jena Krueger on February 28th. She will be sharing live about her experience as a rare disease doctor, researcher, and mother. Make sure to sign up to join us on Facebook at https://t.co/WIl8EQactt #RDNfamily

[Rare Disease Network @RareCareNetwork]

Our theme for rare disease day this year is rare collaborations! We will feature stories and resources that show how various stakeholders in the rare disease community come together to tackle challenging problems and learn from each other. #RDNfamily #rarediseasenetwork