Community Events

Raising Youth Voices is a global collaboration between the National Organization for Rare Disorders (NORD), EURORDIS-Rare Diseases Europe, and Rare Diseases…

Event DetailsWednesday, February 11, 2026, 5:00 - 6:30 PM ESTThe Door163-07 Baisley Blvd, Jamaica, NYHosted by: Christopher OrtizProgram Topic: Hereditary ATTR (…

Each year, landmarks, homes, and communities across the country light up in red to honor those affected by amyloidosis and to raise awareness of this rare disease.…

EMPOWER CHANGEYour Voice Matters in Building a Rare Disease Advisory CouncilJoin the coalition of rare disease patients, experts, and advocates like you to push…

“We hope you will join us for SLC6A1 Connect’s 2024 International Scientific Symposium and Family Conference to be held on December 5-6, 2024 at the Omni Hotel in…

Join the LGS Community on December 5th before AES for a special showing of It’s All Your Fault, Tyler Price! – a new musical from Emmy winner Ben Decter (Lucifer)…

The purpose of this symposium is to bring established investigators, junior researchers and industrials together to discuss and expand this exciting area of…

For people living with rare diseases, finding financial help for out-of-pocket cost is vital—the PAN Foundation can help. Join to learn how you can apply for a PAN…

The PAN Foundation helps people living with life-threatening, chronic, and rare diseases with financial help for out-of-pocket treatment costs. Join to learn about…