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Rare and UltraRare Disease

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Participating in virtual or in-person events is a great way to connect with your community, understand the latest research, find resources, and get involved! Check back often for event updates and new happenings!

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Rare Disease Day

Rare Disease Day takes place on the last day of February every year. The main objective of the day is to raise awareness among decisionmakers and the general public about rare diseases and their impact on the lives of people affected. Learn more

Recurring

MitoAction FAOD Monthly Support Call

Join MitoAction and call host, FAOD Mom Stephanie Harry, on the second Thursday of each month for a support call for families affected by fatty acid oxidation disorders (FAOD). This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAOD. Register

2022 MDA Clinical & Scientific Conference

Orlando, FL

The 2022 MDA Virtual Clinical & Scientific Conference will take place March 13-16, in a hybrid environment, which will include scheduled live-broadcast sessions, on-demand videos, networking sessions, exhibits, and poster sessions. Learn more

National MPS Society Run/Walk Logo

Raleigh Run for Rare

Raleigh, NC

Join the National MPS Society at Dorothea Dix Park on March 26th for the Raleigh Run for Rare! This event will feature a 5K run, 1 mile walk, and post-run family picnic at Harvey Hill. Register

National MPS Society Run/Walk Logo

Napa MPS Race for a Cure

Napa, CA

Join the National MPS Society in Napa, California for the 6th Annual Napa MPS Race for a Cure on May 1, 2022. This event will be held at Kennedy Park and will feature a 5K run, 1 mile walk, family picnic, raffle, and silent auction! Register

International MPS Awareness Day

Every year on May 15, the mucopolysaccharidosis (MPS) and mucolipidosis (ML) community comes together to recognize those diagnosed, think about the loved ones who have been lost, thank doctors and scientists dedicated to finding cures, and acknowledge parents, siblings, and caregivers who work tirelessly to support those with MPS and ML.

Cure Duchenne Logo

CureDuchenne Futures Conference

Orlando, FL

This conference focuses on bringing education, resources, and connection to the Duchenne community in a family-friendly environment. Learn more and register

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