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
Lansing, Michigan
Joined July 2021
- Tweets48
- Following70
- Followers90
- Likes308
Erin Smith, MPH retweeted
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 allstripes.com/pa
Erin Smith, MPH retweeted
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. allstripes.com/blog/from-ita…
Grateful for you and your voice @Citywithchair
“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. allstripes.com/blog/bringing…
Erin Smith, MPH retweeted
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: healthblog.uofmhealth.org/li…
Erin Smith, MPH retweeted
.@_allstripes, @Hemoshear & @OrganicAcidemia are working together to power urgent research into MMA and PA.
Erin Smith, MPH retweeted
I appreciate this is virtual and FREE. Registered and looking forward to the discussion on Monday.
You are invited to join us on Monday, October 3 from 1:00pm – 4:30pm ET for a virtual symposium at which panels of distinguished authors and experts will present their work and engage in discussions around the relationship between #DisabilityAndHealth. bit.ly/3DJZ3q2
Erin Smith, MPH retweeted
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.
Erin Smith, MPH retweeted
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. allstripes.com/blog/it-was-a…
Erin Smith, MPH retweeted
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 allstripes.com/pros
Erin Smith, MPH retweeted
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 retweeted
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. allstripes.com/blog/iep504-r…
Erin Smith, MPH retweeted
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
Grateful for our ambassadors who share their stories.
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. allstripes.com/blog/as-a-bla…
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.
Erin Smith, MPH retweeted
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. allstripes.com/blog/an-insid…
Erin Smith, MPH retweeted
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.
ALT Photo of Leonore and Caitlin is overlaid on two-tone yellow background. Below says "Global Genes RARE Drug Development Symposium." There are arrows pointing to both Leonore and Caitlin with their full names and titles.
Thinking of all those who haven't received answers, are fighting to know more, and deserve more options #UndiagnosedDay
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
ALT Photo shows AllStripes team on Zoom with matching blue backgrounds for Undiagnosed Day.
What would you share about your journey with #fabry? We're working with @FabryOrg to elevate community voices and we want to hear from you! #fabrydisease #raresnapshot #rarediseasetruths
“I like to call Fabry ‘the disease that keeps on giving’ because it just keeps giving different situations, different symptoms.”
Learn more about @clairelouiseom's experiences with Fabry & the impact of sharing your story. allstripes.com/blog/fabry-di…
Erin Smith, MPH retweeted
Today is #WorldSarcoidosisAwarenessDay! Our sarcoidosis program manager J.P. created this video to thank the sarcoidosis community and our foundation partners: @StrongerThnSarc, @SarcofI & @Sarcoid_Network for helping us drive research forward.
Reflecting on all of the incredible advocates we met this weekend. Thank you for sharing your experiences, stories, and hugs with us. Hopefully all the attendees and @FabryOrg are taking a well deserved rest day today!
Our team had a fantastic time at @FabryOrg's Conference this past weekend in Philadelphia! We are looking forward to working alongside this community to advance research for Fabry disease.
