What happened (high level)
In late March 2026, major outlets reported that the U.S. FDA approved Rocket Pharma’s Kresladi gene therapy for severe Leukocyte Adhesion Deficiency‑I (LAD‑I). If you found this page through that headline, you’re not alone: approval news often triggers a spike in searches like “what is LAD‑I?”, “what happens next?”, and “how do we get evaluated?”
Reality check: “Approved” does not automatically mean “immediately available for everyone.” In rare diseases, access can still involve specialty-center referral pathways, insurance processes, and eligibility evaluation. The best thing you can do early is keep your documentation and decisions in one place.
If you’re scheduling or exploring specialty care, organize these 5 things
Think of this as project management for care. You’re building a timeline that makes it easier for clinicians, insurers, and family members to stay aligned.
1) A one‑page patient snapshot (copy/paste friendly)
- Diagnosis & key history (use your clinician’s wording)
- Current medications + last updated date
- Allergies (or “none known”)
- Primary doctors + clinic phone numbers
- Emergency plan notes (only what your care team has already provided)
2) A clean record set (the “send-to-specialty-center” folder)
- Most recent clinic notes (immunology/hematology, pediatrics, etc.)
- Relevant lab results and imaging reports (PDFs if possible)
- Hospital discharge summaries (if any)
- Genetic / diagnostic testing documentation (if applicable)
- Insurance cards + referral/authorization paperwork
3) A timeline (dates matter more than paragraphs)
- Symptoms/infections or major events with approximate dates
- Hospitalizations, ER visits, procedures
- Medication changes (what changed, when, and why)
- Key conversations: who said what, and what the next step was
4) A running “questions” list (kept in one place)
- “What is the evaluation process at your center?”
- “What records do you want in advance?”
- “What’s the expected timeline from referral → consult → next steps?”
- “Who is our point of contact (nurse coordinator / portal / phone)?”
- “What should we do if something changes between appointments?”
5) A communication log (saves hours)
- Call/portal message date + who you contacted
- What you asked
- What they replied (or “no response yet”)
- Follow-up date you set for yourself
How Jabbit helps (without giving medical advice)
- One place for your med list, documents, and questions
- Reminders for calls, labs, refills, and appointment prep
- A simple timeline so you don’t have to re-explain the story from scratch
Get Jabbit on the App Store — set up a “LAD‑I care binder” in minutes.