Upcoming Events

February 24-28th, 2019 — Rare Disease Week

February 28th, 2019 — Rare Disease Day

March 30th, 2019 — Rare on the Road (Boston, MA)

April 24th, 2019 — World Meningitis Day

Schedule

Full List of Events & Milestones

Rare in the Square - January 7 - 9th

Welcome to the third annual RARE in the Square, to be hosted 8 am-5 pm January 7-9, 2019. Set in San Francisco’s Union Square, and coinciding with J.P. Morgan’s annual Healthcare Conference, RARE in the Square is a unique networking event that assembles investors, industry partners, patient community leaders, and influencers. It offers a forum for rare disease stakeholders to gather in a distinctive and convenient location to connect, network, and unwind, all at the epicenter of the J.P. Morgan Healthcare Conference.

 

Rare Disease Week - February 24 - 28th

Rare Disease Week on Capitol Hill brings rare disease community members from across the country together to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators.

Rare Disease Day - February 28th

Rare Disease Day takes place on the last day of February each year.  The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.  The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

Rare on the Road (Boston, MA) - March 30th

The EveryLife Foundation and Global Genes are excited to partner for RARE on the Road, a Rare Disease Leadership Tour to bring critical education and insights to rare disease patients, caregivers and other advocates. We are uniting to build and activate the rare disease community at the local level. Whether you’re new to the rare disease community or a “seasoned veteran” this workshop will benefit you!

World Meningitis Day - April 24th

CoMO are responsible for organising World Meningitis day on the 24th of April each year.  This is a great opportunity for people all over the world to raise their voices for meningitis, through telling patient stories, raising awareness of the signs and symptoms of the disease and increasing knowledge of available vaccines.

Rare on the Road (Birmingham, AL) - May 4th

The EveryLife Foundation and Global Genes are excited to partner for RARE on the Road, a Rare Disease Leadership Tour to bring critical education and insights to rare disease patients, caregivers and other advocates. We are uniting to build and activate the rare disease community at the local level. Whether you’re new to the rare disease community or a “seasoned veteran” this workshop will benefit you!

Recurrent Meningitis Awareness Day - May 6th

Recurrent Meningitis Awareness Day takes place on the first Monday of May every year.  The main objectives of Mollaret’s Meningitis Awareness Day is to raise awareness about recurrent meningitis, its impact on patients lives, and help attract researchers to help us find a cure.

Viral Meningitis Week - May 6-12th

Viral Meningitis Week is the first week of May yearly.  It is sponsored by the UK charity Meningitis Now and their aim, as always, is to inform the public, medical professionals and employers about the true impact of the disease, the long-term problems it can bring and tackle the misconception that viral meningitis is always a ‘mild’ disease.

 

Rare on the Road (Denver, CO) - May 18th

The EveryLife Foundation and Global Genes are excited to partner for RARE on the Road, a Rare Disease Leadership Tour to bring critical education and insights to rare disease patients, caregivers and other advocates. We are uniting to build and activate the rare disease community at the local level. Whether you’re new to the rare disease community or a “seasoned veteran” this workshop will benefit you!

Rare on the Road (Sioux Falls, SD) - July 13th

The EveryLife Foundation and Global Genes are excited to partner for RARE on the Road, a Rare Disease Leadership Tour to bring critical education and insights to rare disease patients, caregivers and other advocates. We are uniting to build and activate the rare disease community at the local level. Whether you’re new to the rare disease community or a “seasoned veteran” this workshop will benefit you!