JinIX Rare Disease Care

JinIX helps patients understand their disease, track progression, and learn from real treatment experiences.

[JinIX Rare Disease Care @jinix_io]

JinIX is proud to support the Face Forward Summit 2026, hosted by the Ramsay Hunt Syndrome Foundation! 💙https://t.co/ZptZCFcl5v

Look forward to connecting with patients, caregivers, and advocates.

#FaceForward2026 #RamsayHuntSyndrome #RareDisease

[JinIX Rare Disease Care @jinix_io]

we believe the future is Patient + AI + Doctor, working together to find answers.

A 2026 study found:
• AI: 60.0% accuracy
• Clinicians: 48.2%
• AI + clinicians: 94.3% diagnostic coverage

https://t.co/BGC7jenz0t
#RareDisease #AIinHealthcare #JinIX

[JinIX Rare Disease Care @jinix_io]

@FDA This is a meaningful milestone for the rare disease community. 💙 The first FDA-approved therapy for GSDIa brings new hope to patients and families who have waited years for a treatment option. Every rare disease breakthrough matters.

[U.S. FDA @FDA]

Today, we approved a one-time gene therapy product for treatment as an adjunct to nutritional management of patients 8 years of age and older with glycogen storage disease type Ia (GSDIa). This is the first therapy approved for this condition in patients 8 and older. https://t.co/LekXwWvpj9

[JinIX Rare Disease Care @jinix_io]

AI health tools are getting easier to build and easier to access. But for rare disease patients, the hard part was never just getting an AI answer. It’s getting an answer that makes sense of years of symptoms, medications, tests together. #raredisease #patient #AI
https://t.co/euW40ekRPk

[JinIX Rare Disease Care @jinix_io]

A new study identified SAMD9L as a key gene linked to inflammation and immune activity in atherosclerosis.

JinIX is proud to support the #SAMD9L community and help connect patients with researchers.
https://t.co/L1nW3ccdDm

#RareDisease #Genedisease #PatientCare #samd9L

[JinIX Rare Disease Care @jinix_io]

Even the most meticulously tracked body can miss what's hiding in plain sight.

Bryan Johnson went 11 years before autoimmune gastritis was caught — not through wearables, but through a biopsy.
https://t.co/nnegzRMHMy
#AutoimmuneDisease #RareDisease

[JinIX Rare Disease Care @jinix_io]

We’re building a place where patients can organize their medical journey, connect with others with similar challenges, and gain insights that help move their case forward.
#RareDisease #Healthcare #Rarediseaseawareness #PatientAdvocacy
https://t.co/NqVXhR7ENS

[JinIX Rare Disease Care @jinix_io]

🤝 New partnership! JinIX × Association Congolaise du Vitiligo — working together to bring patient-centered digital health support, expert insights, and education to people living with vitiligo in the DRC 🌍💙

More at https://t.co/khz6cthO0K

#raredisease #patientadvocacy

[JinIX Rare Disease Care @jinix_io]

Excited to announce our partnership with IAmHeardCoalition. 🤝
Together we're expanding access to AI-powered health guidance, real medical expert insights, and community support for people living with syringomyelia.
https://t.co/vven274zy0 | https://t.co/z3JTlHq2uZ
#Syringomyelia #RareDisease #PatientAdvocacy

[JinIX Rare Disease Care @jinix_io]

Series: Interviewing 100 rare disease patients.

Stories shared with patient knowledge and consent. Identifying details protected.

DM me if you want to be featured. 👇
#ARDS #PulmonaryFibrosis #COPD #RareDisease #ChronicIllness #PatientStory

[JinIX Rare Disease Care @jinix_io]

Patient Story #3｜ARDS · Pulmonary Fibrosis · COPD

Seven years of warning signs lived quietly in the chart.

In October 2018, the machine breathed for her.

[JinIX Rare Disease Care @jinix_io]

June 2019: readmitted.

Dysphagia — throat muscles damaged by weeks of intubation. Anxiety. Insomnia. Thoracic sequelae from positive-pressure ventilation.

This is Post-ICU Syndrome. It affects 50–70% of ARDS survivors.

[JinIX Rare Disease Care @jinix_io]

Most recent entry: April 7, 2026.
Nephrology. Columbia Tarrytown. Hypertension follow-up.
5 major medical centers. 10 specialties. 497 clinical encounters.
The patient is alive.
The journey is not over.

DM me if you want to be featured. 👇
#raredisase #AI #healthcare #patient

[JinIX Rare Disease Care @jinix_io]

Patient Story #2 | ALS · CIDP · Rasmussen Syndrome · cGVHD · AML

He survived childhood leukemia.
Then beat it again at 30-something — with a bone marrow transplant.
Then the new immune system turned on his nerves, his muscles, and his brain.

[JinIX Rare Disease Care @jinix_io]

September 19, 2025: riluzole is discontinued.
Clinically, it means hepatotoxicity, intolerable side effects, disease progression beyond the point of benefit — or a decision to stop fighting the disease and start managing its consequences.
No edaravone. No tofersen.