Alabama Rare

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

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 alrarediseaseday.org #rarediseases #rarediseaseday

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

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

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

@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! 🤣

Thanks to the beloved advocate @SwapnaSpeaks for all of your hard work at the @AlabamaRare event today. You're the best 💙 Even if I got feeding tube pump alert stress for a moment and thought I forgot about my kid! 😹😹

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

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 go.uab.edu/rarediseaseday…

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

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

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

@AlabamaRare @Srotberg15 Hey, it's a great lineup! I am sure if it was the whole time they could fill it with TONS of useful information. Alabama Rare always puts on some of the best content! I always tune in for legislative tips & it isn't even my state!🤣😉

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

Thank you Dr. Somerville for sharing!

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!

@Purrfectly_Rare @Srotberg15 Lol Marni!!

@Srotberg15 @AlabamaRare That is a long panel!

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

We are so excited to partner with @BioCrystPharma to light up businesses in Birmingham in #rarediseaseday colors on Monday February 28! Learn more at alabamarare.org/light-up-for-r…

Happy #rarediseaseday!! Here is an article featuring our Director of Development and Programs, Brooke Thomas. Read at uab.edu/medicine/mstp/… to learn more about Brooke's journey with #hurlersyndrome and be inspired to share your own story! #alrarediseaseday #rareisnotrare

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!

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 bddy.me/3sAgiRP