Alabama Rare

An advocacy group formed to unite the rare disease community of AL to advocate for needs, provide support & education for patients, and awareness for the public

[Alabama Rare @AlabamaRare]

Watch LIVE on our FB Page or come in person this morning at our #NewbornScreening Legislative Breakfast. The aim is to inform the legislature about the newborn screening process and the critical importance of early diagnostics and treatments.
#rarediseases #alpolitics

[Alabama Rare @AlabamaRare]

We are off to the races!! The 10th annual rare disease symposium has started! Are you joining us? You can still join us virtually at https://t.co/awdZlasvOb #rarediseases #rarediseaseday

[Alabama Rare @AlabamaRare]

Here is our exciting agenda for the 10th annual #raredisease symposium! Join us on March 10 in #Alabama! We have in person and virtual options. Register today! @ChildrensAL @uabmedicine @cctsnetwork #rarediseaseday #rarediseaseday2023 #RareDiseases

[Alabama Rare @AlabamaRare]

Join us for the 10th Annual #rarediseases symposium on March 10 in #Alabama! We have in person and virtual options. Register today! @ChildrensAL @uabmedicine @cctsnetwork #rarediseaseday

[Alabama Rare @AlabamaRare]

We are excited to be logged on and ready to listen to #clearingthepath2022

[Women’s Foundation of Alabama @WomensFdnAL]

We’re all smiles counting down the clock until our Clearing the Path research showcase is back in person tomorrow! We’re also offering a virtual option where you can be apart of the conversation from your home! See you tomorrow morning at 7:30 AM 🏡#clearingthepath2022

[Alabama Rare @AlabamaRare]

@OnceUponAGene @SwapnaSpeaks Thank you Effie being amazing and sharing so well! When you hear one you hear all of them in and outside of your head! 🤣

[Alabama Rare @AlabamaRare]

Renie Moss on how patients and families to keep up with available treatment options - “I go to https://t.co/gmeUNTbNWq to know who is doing the research and where it is being done once a month”

[Alabama Rare @AlabamaRare]

We have started the 9th annual #rarediseaseday symposium with Natasha Shur from @ChildrensNatl talking about creating a telemedicine model for clinical genetics Join us at https://t.co/EyPgrLjGlo

[Anna C.E. Hurst, MD @acedens]

Today is #RareDiseasesDay in recognition of people with rare conditions and the need for equity and access to medical treatments.

I’m thankful for the patients and families who allow me be a small part of their rare journey.

#showyourstripes #icareforrare #LightUpForRare

[Alabama Rare @AlabamaRare]

Thank you Chris from @USRepGaryPalmer office for meeting with residents of Birmingham and surrounding area to discuss priority policies for our alabama #rarediseases community as part of #RareDC2022

[Alabama Rare @AlabamaRare]

@Purrfectly_Rare @Srotberg15 I think that’s a quote we need on our website! 😉 Thank you Marni 😘

[Effie Parks @OnceUponAGene]

Join us on #RareDiseaseDay for a community discussion. Ask questions to some of our favorites experts and advocates. #SelfCare #Grief #MentalHealth #Hacks #Inclusion #EarlyIntervention @ot4lyfe @Inclusive_SpEd @SaritaEdwards @prk2 @angelaidcares

[Alabama Rare @AlabamaRare]

Thank you Dr. Somerville for sharing!

[Alabama Rare @AlabamaRare]

We are so excited to co-host #raredisease free symposium with @uabmedicine @childrensofal @cctsnetwork it’s on advances in telehealth and therapies & will have advocate panel about finding your voice ft. @OnceUponAGene @Srotberg15 @Rasheeradiara & Morgan Cheek register today!

[Alabama Rare @AlabamaRare]

@Purrfectly_Rare @Srotberg15 Lol Marni!!

[Alabama Rare @AlabamaRare]

@Srotberg15 Thank you Seth! We are excited to have you!!

[Alabama Rare @AlabamaRare]

We are so excited to partner with @BioCrystPharma to light up businesses in Birmingham in #rarediseaseday colors on Monday February 28! Learn more at https://t.co/1YOphjcDo9

[Alabama Rare @AlabamaRare]

Happy #rarediseaseday!! Here is an article featuring our Director of Development and Programs, Brooke Thomas. Read at https://t.co/u9yBSwmAyS to learn more about Brooke's journey with #hurlersyndrome and be inspired to share your own story! #alrarediseaseday #rareisnotrare

[Alabama Rare @AlabamaRare]

Happy #RareDiseaseDay we are very thankful for everyone who attended and helped with our #raredisease symposium this weekend! We wish you continued perseverance, resilience and strength on your #RareDiseases journey!

[Smith Genomic Clinic @SmithGenomicMed]

Rare disease patients spend an average of 8 years searching for a diagnosis, & some search for decades. April Hudson spent 40 years searching for a diagnosis & finally found one, thanks to The Smith Family Clinic for Genomic Medicine #RareDiseaseDay2021
https://t.co/vbBwsyoylr