Erin Smith, MPH

Rare disease patient advocacy & engagement
Lover of dogs + hiking + food
Always in service of Graham's legacy (b.3/17/14-d.8/2/14)
Views are my own

[AllStripes @_allstripes]

Kathy is an Ambassador for the AllStripes #PropionicAcidemia research program. If you are a person, or a family member of a person with PA, and are interested in contributing medical history to advance new treatments, learn more at https://t.co/IMPOkEfAHA

[AllStripes @_allstripes]

In an article for our Staff Story series, our Chief of Staff, Aditya Shah, shares the tricontinental journey his family went through to receive a Rett syndrome diagnosis for his daughter, Lila. https://t.co/Om4WFN27xm

[Erin Smith, MPH @JustErinToday]

Grateful for you and your voice @Citywithchair

[AllStripes @_allstripes]

“Being born with a disability that has evolved or progressed in my lifetime, I’ve had to adapt every moment.” Read more about how Maria, who lives with Morquio syndrome, brings a creative approach to her access tools. https://t.co/txj3pWweTV

[AllStripes @_allstripes]

Halloween can be a challenging holiday for children with disabilities. Here are some tips on picking out costumes, preparing for Halloween night and ways for everyone to be inclusive: https://t.co/gUA7dmx4ic

[AllStripes @_allstripes]

.@_allstripes, @Hemoshear & @OrganicAcidemia are working together to power urgent research into MMA and PA.

[Stephanie Fischer @RarePOV]

I appreciate this is virtual and FREE. Registered and looking forward to the discussion on Monday.

[AllStripes @_allstripes]

At AllStripes, our mission is to unlock new treatments for people affected by rare disease, and we're always celebrating advancements in the rare disease community and applauding the hard work of the stakeholders and families involved.

[AllStripes @_allstripes]

We spoke to Dr. Chapman about her ongoing work to advance research and treatments for people living with MMA & PA, including through the AllStripes and @HemoShear JUMP study. https://t.co/ezrwIuM1vB

[AllStripes @_allstripes]

We created this resource to highlight the differences between CLOVES & Proteus. If you are an individual, or a family member of an individual with PROS, and are interested in contributing medical history to advance new treatments, learn more at https://t.co/qDV9xIktKS

[Erin Smith, MPH @JustErinToday]

@_allstripes @CurePSP 8 feet worth of amazing data! Thank you #PSP community for supporting this incredible project.

[AllStripes @_allstripes]

Check out our Director of Epidemiology Nelson Pace, PhD with our 8-foot-tall research poster on treatment patterns for depression and anxiety among patients with #ProgressiveSupranuclearPalsy in collaboration with @CurePSP! #ICPE2022

[Erin Smith, MPH @JustErinToday]

@hygienie1 @_allstripes this is such an important point, thank you @hygienie1! curious what are some tips for adults who are missing support during the school year?

[AllStripes @_allstripes]

Back-to-school season can feel overwhelming for rare disease caregivers. To help make things a little easier, we created a basic explainer about the differences between IEPs and 504s. https://t.co/tZHuh2kPrk

[AllStripes @_allstripes]

On #NationalNonprofitDay, we want to thank the nonprofits that support & advocate for those affected by rare disease. We are grateful to work closely with many of these organizations and are committed to continue supporting their important work. #RareDisease #PatientAdvocacy

[Erin Smith, MPH @JustErinToday]

Grateful for our ambassadors who share their stories.

[AllStripes @_allstripes]

Ikedra has spent much of her life being shuttled from hospital to hospital, and specialist to specialist, but no one could tell her what was happening to her body. https://t.co/MWUaQVICLt

[Erin Smith, MPH @JustErinToday]

#wewillremainvigilant

[blkwomenshealth @blkwomenshealth]

Today, #RoeVWade was overturned -- undoing 50 years of progress in women's rights, privacy, bodily autonomy and access to a fundamental right to healthcare.

As our CEO, Linda Goler Blount states, we will remain vigilant in our efforts to restore this most basic right to women.

[AllStripes @_allstripes]

Ahead of #WorldSickleCellDay this Sunday, advocates Wunmi Bakare (@ItsWunmiB) and Teonna Woolford (@sickle_t) describe the details of their days and the drive behind their work. https://t.co/T0k3sV8fJp

[Erin Smith, MPH @JustErinToday]

@_allstripes @Kenz_Chronicles @GlobalGenes An honor to be among such incredible nominees ❣️

[AllStripes @_allstripes]

Last week a few of our team members attended the @GlobalGenes RARE Drug Development Symposium! We had a fantastic time meeting industry members and patient advocates who are all on a mission to bring treatments to the rare disease community.

[Erin Smith, MPH @JustErinToday]

Thinking of all those who haven't received answers, are fighting to know more, and deserve more options #UndiagnosedDay

[AllStripes @_allstripes]

According to @RareDiseases, it takes 7 years on average to receive a correct rare disease diagnosis. The AllStripes team is showing support for the undiagnosed rare disease community on their diagnostic journeys. #UndiagnosedDay