Rare Action Florida

Advocating for the rare community in Florida.

[Rare Action Network @RareAction]

This #RareDiseaseWeek, NORD wants to thank @RepGusBilirakis and @DorisMatsui for introducing the #RAREAct, which clarifies the intent of the #OrphanDrugAct and protects orphan drug development for children and other hard-to-study groups. Thank you, Reps. Bilirakis and Matsui!

[Rare Disease Day @rarediseaseday]

Have your social media pledge cards ready? Downloadable in 8 languages from our website, show your support for Rare Disease Day now! Get them here: https://t.co/lLgsmLrUvN #RareDiseaseDay #ShareYourColours #Awareness #LightUpForRare

[Rep. Adam Anderson @AdamAndersonFL]

“It's my long term goal to help position the state of Florida to be the nationwide leader in gene therapy and genetic research,” Anderson said, sharing that approximately 80% of rare diseases are genetic in origin” Rep. Adam Anderson

#rarediseaseday

https://t.co/EGDEGuGSDD

[Rare Action Florida @RareActionFL]

#RareDiseaseDay2024 at the Florida Capitol -- press conference with @AdamAndersonFL and guests.

[Rare Action Network @RareAction]

Action Alert: 75+ advocacy orgs today are urging Congress to pass the #SafeStepAct. Join the #SSADayOfAction and make YOUR voice heard! https://t.co/AetmvPbS9C

[Rare Action Florida @RareActionFL]

@RareAction @marcorubio @ScottforFlorida

[Rare Action Network @RareAction]

75+ patient & provider groups are calling on Congress to pass the #SafeStepAct - join & make YOUR voice heard! This bill helps ensure patients have safe and timely access to medications their doctors prescribe. #SSADayOfAction https://t.co/wTE0KOYm7k

[Rare Action Network @RareAction]

75+ patient & provider groups are calling on Congress to pass the #SafeStepAct - join & make YOUR voice heard! This bill helps ensure patients have safe and timely access to medications their doctors prescribe. #SSADayOfAction https://t.co/wTE0KOYm7k

[Rare Disease Day @rarediseaseday]

Tomorrow is #RareDiseaseDay 💜💚💙

How are you planning on getting involved? Let us know in the comments below! 👇👇👇

[Rare Disease Day @rarediseaseday]

TODAY is #RareDiseaseDay! 💙💚💜

All over the world, the rare disease community are sharing their colours and demanding equity for people living with a rare disease.

As a global community, we have a powerful voice! 📣

How are you sharing your colours today? 👇👇👇

[National Organization for Rare Disorders (NORD) @RareDiseases]

In honor of #RareDiseaseDay today, NORD is sharing Kala's story. Kala is her son's biggest supporter & is spending today urging others to #advocate for #RareDisease related matters. Read more here on NORD's blog & #ShowYourStripes like Kala: https://t.co/AVOcc7sYcO

[Rare Action Florida @RareActionFL]

Rare Family--> Today is our day to unite!! There are approx 2 million Floridians affected by a rare disorder -- together we are strong! Raise your voice and #ShowYourStripes

[National Organization for Rare Disorders (NORD) @RareDiseases]

Today is Rare Disease Day! 🦓

It's time to Show Your Stripes! How are you getting involved? Why is this day important to you? Share you answer on social media using the hashtags #RareDiseaseDay and #ShowYourStripes.

Learn more at: https://t.co/p0g5CEy1W0

[Rare Action Florida @RareActionFL]

All the more reason FL needed an RDAC to address these areas. @dennisbaxley @DuBoseforFL @RareDiseases @RareAction @HealthyFla

[Rare Action Florida @RareActionFL]

FL #StateReportCard is abysmal. Important issues have a direct impact on those affected by a #RareDisease (approx. 2 million in Florida). Read it now: https://t.co/9BWjhOldTP

[Rare Action Florida @RareActionFL]

2022 Report Card
Medicaid Financial Eligibility: F
Medical Nutrition: B
Newborn Screening: B
Rx Drug Out-of-Pocket Costs: F
Protecting Patients in State Medicaid Programs: Fail
Protecting Patients in State-Regulated Insurance: F
Step Therapy (Fail First): F
Telehealth: Fail

[National Organization for Rare Disorders (NORD) @RareDiseases]

Join the #RareDisease community for a tweetchat featuring your favorite physicians talking #RareDiseaseDay, the patient/physician connection & more! Follow NORD’s Twitter or #RDDChat22 between 6:30-7:00pm ET Monday, February 28, 2022.

[National Organization for Rare Disorders (NORD) @RareDiseases]

“We participate in Rare Disease Day to bring awareness to the sheer number of affected families & the gaps in medical & emergency care. We participate in Rare Disease Day to save lives.”

Read more from those partnering w/ NORD to support #RareDiseaseDay: https://t.co/erT6bX5KB2

[National Organization for Rare Disorders (NORD) @RareDiseases]

Today, NORD published the latest edition of its annual #StateReportCard, which rates all 50 states and DC on the most important issues affecting the over 25 million Americans living with a #RareDisease. Explore this important resource now: https://t.co/AMc4ZsY4Rt

[National Organization for Rare Disorders (NORD) @RareDiseases]

.@btmcaresforrare & NORD are partnering up for a #RareDiseaseDay Special airing on @BalancingActTV on Monday, Feb. 28 at 7:30am ET on @LifetimeTV.
Every patient has a story. Hear three courageous moms talk about their unyielding commitment to provide the best for their child. 🦓