Events

Rare Patient Advocacy Summit*

Sheraton San Diego Hotel and Marina 1380 Harbor Island Drive, San Diego, CA

As the largest gathering of rare disease patients, caregivers, thought leaders and other rare disease stakeholders in the world, the RARE Patient Advocacy Summit is an unparalleled opportunity to forge...

2019 PCORI Annual Meeting*

Washington Marriott Wardman Park 2660 Woodley Road NW, Washington, DC

2019 PCORI Annual Meeting - Making a Difference: Using Patient-Centered Research Results in the Real World As part of this year's theme, "Making a Difference: Using Patient-Centered Research Results in the...

World Orphan Drug Congress 2019 – Europe

Barcelona

World Orphan Drug Congress is Europe's meeting place for the rare disease community. The Conference offers strategic keynote plenaries, themed tracks and dedicated networking sessions, you have the chance to...

Rare Voice Awards

Arena Stage 1101 6th Street, SW, Washington, DC

The RareVoice Awards is an annual celebration to honor advocates who give rare disease patients a voice on Capitol Hill. Patient advocates, industry executives, and Congressional and government agency staff...

A Rare Affair

San Francisco, CA San Francisco, CA

Join 250 venture capitalists, biotech and finance executives, wine enthusiasts and rare disease advocates on Sunday, January 12th for A Rare Affair, the wine tasting and networking event hosted by...

Rare in the Square

Union Square 335 Powell Street, San Francisco, CA

Set in San Francisco’s Union Square, RARE in the Square brings together rare disease innovators to forge partnerships and advance innovation. The event takes place in concurrence with the J.P....

16th Annual WORLDsymposium

Hyatt Regency Orlando 9801 International Drive, Orlando, FL

WORLDSymposium™ is an annual research conference dedicated to lysosomal diseases. WORLD is an acronym that stands for We’re Organizing Research on Lysosomal Diseases. Since its inception as a small group of passionate researchers...

Rare Disease Week on Capitol Hill 2020

Washington, DC

WHAT IS RARE DISEASE WEEK ON CAPITOL HILL? Rare Disease Week on Capitol Hill brings rare disease community members from across the country together to be educated on federal legislative...

5th Annual Sanford/PPALS PACT *

Sanford Research Center, Sioux Falls, SD Sioux Falls, SD

Dear PPALS supporters, After closely monitoring the rapidly evolving COVID-19 public health crisis, Professional Patient Advocates in Life Sciences' (PPALS) curriculum planning team, has decided to cancel the 2020 Sanford/...

DIA 2020 Global Annual Meeting in Washington

Washington, DC

About DIA 2020 Global Annual Meeting For more than 50 years, DIA has provided the world’s largest global, neutral stage for life science professionals to come together and address healthcare...

PPALS Webinar Series

The Integration of the Patient Voice in Metrics to Predict Clinical Trial Success Join us to learn how BioMarin, a global pharmaceutical company, has effectively used metrics to incorporate the...

PPALS Webinar Series

Shaping the Patient Advocate Role through Health Equity, Diversity and Inclusion Part 1: Diversity in Talent of Patient Advocacy Join us for a webinar series that will educate on how...

12th Annual Great Plains Rare Disease Summit

Sanford Research Center, Sioux Falls, SD Sioux Falls, SD

Sanford Research and its investigators have a strong interest in and commitment to finding cures and treatments for rare diseases.  In honor of the 15th annual celebration of Global Rare Disease...

NORD Breakthrough Summit, Washington DC

Marriot Marquis in Washington, DC

NORD Summit October 17-18 2022   This year, NORD is thrilled to welcome all community stakeholders back together in-person to Washington, DC for the 2022 Rare Diseases and Orphan Products...