Stiff Person Syndrome Research Foundation

RARE Disease Week takes place March 2nd to 4th, 2027 in Washington, DC. The RARE Foundation is offering a limited number of travel reimbursements for advocates and caregivers attending. Applications close Friday, November 6th. Apply here: surveymonkey.com/r/SF5MT27

National Family Caregivers Month starts today. To everyone caring for someone with SPS: thank you. Tell us what support looks like for you. survey.alchemer.com/s3/90751… Please share by November 3rd. #SPScommunity

Living with SPS? There’s still time to tell us what support helps most, and where more could help. Five to 10 minutes. survey.alchemer.com/s3/90773… Please share by November 3rd. #SPScommunity

National Family Caregivers Month starts today. To everyone caring for someone with SPS, thank you. Help us shape future support: Living with SPS: survey.alchemer.com/s3/90773… Caring for someone with SPS: survey.alchemer.com/s3/90751… Please share by November 3rd. #SPScommunity

Reminder for SPS caregivers: there’s still time to share what support looks like for you. Five to 10 minutes. survey.alchemer.com/s3/90751… Please share by November 3rd. #SPScommunity #caregivers

Reminder: if you live with SPS, there’s still time to tell us what support matters most to you. Five to 10 minutes. survey.alchemer.com/s3/90773… Please share by November 3rd. #SPScommunity

Reminder: there’s still time to tell us what support matters most to you. Five to 10 minutes, no names. Living with SPS: survey.alchemer.com/s3/90773… Caring for someone with SPS: survey.alchemer.com/s3/90751… Please share by November 3rd. #SPScommunity

RARE Disease Week takes place March 2nd to 4th, 2027 in Washington, DC. The RARE Foundation is offering a limited number of travel reimbursements for advocates and caregivers attending. Applications close 11/6 Apply here: surveymonkey.com/r/SF5MT27

Perth scientist Stephanie Moore talks with A Current Affair about life with Stiff Person Syndrome and learning to walk again. Watch: youtu.be/CK4FdHD_8Pc #StiffPersonSyndrome #RareDisease

Living with SPS? Tell us what support looks like in your life. Five to 10 minutes, no names. survey.alchemer.com/s3/90773… Please share by November 3rd. #SPScommunity

Caring for someone with SPS? We want to hear what support looks like for you, too. Five to 10 minutes, no names. survey.alchemer.com/s3/90751… Please share by November 3rd. #SPScommunity #caregivers

Ahead of National Family Caregivers Month, we want to hear what SPS support looks like in your life. Each survey takes 5-10 minutes. Living with SPS: survey.alchemer.com/s3/90773… Caring for someone with SPS: survey.alchemer.com/s3/90751… Please share by November 3rd.

SPSRF founder and CEO Tara Zier is at the 2026 #NORDSummit in Washington, DC, representing SPSRF as the rare disease community works on faster answers, better access, and policy that reaches patients. @RareDiseases #RareDisease #StiffPersonSyndrome

Ready to make your voice heard on Capitol Hill? RARE Disease Week is March 2–4, 2027, in DC, and travel reimbursements are available for patients and caregivers. Apply by Nov 6: tinyurl.com/5brhmxau #RareDiseaseWeek #StiffPersonSyndrome

Rare disease progress depends on stable research agencies and the experts who work there. Ask Congress to protect them. tinyurl.com/yst4vbzv #StiffPersonSyndrome #RareDisease

Ask Congress to fund the FDA’s Rare Disease Innovation Hub with $5M in FY 2027. It helps move rare disease treatments forward, SPS included. rareadvocates.quorum.us/camp… #StiffPersonSyndrome #RareDisease

Missed the Autoimmune Community Summit? Sessions were recorded, including Dr. Amanda Piquet (CU Anschutz) on how the immune system can affect the brain. Free to register and watch: autoimmune.vfairs.com/

SPS doesn’t always look like what it is. For Invisible Disabilities Week, revisit our founder and CEO Tara Zier’s conversation on living with stiff person syndrome. 🎧 youtu.be/bzoCdZYjEn0?is=2uxg… #InvisibleDisabilitiesWeek #StiffPersonSyndrome #RareDisease

There’s no FDA-approved treatment for stiff person syndrome yet. A CAR T cell therapy called miv-cel could become the first. Science News looks at the results, the open questions, and what it means for people living with SPS: sciencenews.org/article/car-… #StiffPersonSyndrome