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Rare Disease Innovations Institute

@rdii_org

RDII is a non-profit organization focused on education, engagement and to equip the rare disease community

rdii.org/
Joined June 2021
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Photo by Rare Disease Innovations Institute (@rdii_org)Photo by Rare Disease Innovations Institute (@rdii_org)Photo by Rare Disease Innovations Institute (@rdii_org)Photo by Rare Disease Innovations Institute (@rdii_org)Photo by Rare Disease Innovations Institute (@rdii_org)Photo by Rare Disease Innovations Institute (@rdii_org)Photo by Rare Disease Innovations Institute (@rdii_org)Photo by Rare Disease Innovations Institute (@rdii_org)Photo by Rare Disease Innovations Institute (@rdii_org)Photo by Rare Disease Innovations Institute (@rdii_org)
Reasons why rare disease patients face depression/anxiety.
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In a new @reflectornews opinion, RDII founder and pres. Tara Britt urges @SenTedBuddNC, @SenThomTillis & Congress to reform the role that #PBMs play in driving up health care costs for North Carolina patients. Read more: bit.ly/3Wj35NK
Tara Britt: System of medicine middlemen needs reform

Tara Britt: System of medicine middlemen needs reform

North Carolina patients are being forced to choose between affording health care or putting food on the table thanks to health industry middlemen who are raising costs for consumers.

reflector.com
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Here are a few reasons why rare disease caregivers face depression and/or anxiety.
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Interested in starting a Rare Disease Advisory Council? We can help! Message us for details.
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Did you know our CEO, Tara Britt, also does consulting on rare disease policy? Message us for more details! #RareDiseasePolicy #rarediseaseconsulting
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This article from Psychology Today is a couple of years old, but it still resonates today. psychologytoday.com/us/blog/…
The Stigma of Rare Disease Is Magnified When You’re LGBQ+

The Stigma of Rare Disease Is Magnified When You’re LGBQ+

New research finds that LGBQ+ women with rare disorders experience intersectional stigma. The study highlights the need for accessible community events.

psychologytoday.com
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What a great start to Seattle Children’s Rare Fair. Powerful!
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We don't want to let the month of May end without recognizing National Foster Care Month. Thank you to all of the foster families who take in children with rare diseases and love them like their own. We appreciate you!
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Congrats to IGAN for 20 years of leadership for the IgA Nephropathy community!
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We're excited to be participating in the Seattle Rare Disease Fair! Payer Forum: May 30 Seattle Rare Disease Fair: May 31 to June 1 RSVP today for FREE. These events will have a lots of great speakers, discussions and advocacy opportunities! secure.everyaction.com/zJjdm…
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#DNADay24 celebrates the power of genetics and genomics. Visit genome.gov/dna-day to see what activities are happening near you!!
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Thank you to all of the volunteers in our rare communities!
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Thank goodness for siblings!
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Today is World Autism Awareness Day. Learn more at autismspeaks.org/world-autis…
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Great webinar explaining prescription drug affordability boards! youtube.com/watch?v=9PA8Pyhs…
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Recognizing International Women's Day!
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Today is Rare Disease Awareness Day. Did you know that 50% of rare diseases typically occur in children? #rarediseaseawareness
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Globally, 300M+ people live with a rare disease. Of those affected, 72% have genetic diseases. #rarediseaseawareness
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80% of rare diseases are genetic in origin, and thus are present throughout a person's life - even if symptoms do not immediately appear. #rarediseaseawareness
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Approximately 40% of rare disease patients are misdiagnosed more than once. We need to do better! #rarediseaseawareness
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