Upcoming Events on the Rare Calendar

August 30-31
The Neuromusclar Disease Foundation will host its 5th Annual Symposium on GNE Myopathy  August 30-31st at UCLA. NDF’s event empowers patients to advocate and educate for their disease. Several patients whom attended last year’s Symposium have since become Certified Patient Advocates and went on to host GNE Myopathy Patient Days in their home countries. For information, go to the Symposium website.

September 12
Rare Disease Legislative Advocates will host the Seventh Annual RareVoice Awards on September 12 at the Arena Stage, 1101 6th Street SW, Washington, D.C. 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 gather to honor these outstanding advocates for the rare disease community. For more information, visit the event website RDLA website.

September 13
EveryLife Foundation is hosting its annual Scientific Workshop on September 13 in Washington, D.C. The Rare Disease Scientific Workshop series is designed to facilitate and help guide improvements in the development process for rare disease treatments. The workshops are open to the public, including the media. Space is limited. For more information, go to the EveryLife Foundation website.

October 3-4
Global Genes will hold the 7th Annual Rare Patient Advocacy Summit at Hotel Irvine in Irvine, California on October 3-4, 2018 The Summit is the largest educational event for rare disease patients and advocates worldwide. Offering five specialized learning tracks and led by more than 100 rare disease experts, the event equips and activates those affected by rare disease. For more information, go to the Summit website.

October 15-16
The National Organization for Rare Disorders will hold its Rare Diseases and Orphan Products Breakthrough Summit
October 15-16, 2018 in Washington, D.C. During the 2018 NORD Rare Summit, more than 700 leaders from FDA, NIH, industry, patient groups, payers and research institutions will address the New Era of Patient-Focused Innovation. Together, NORD Rare Summit attendees will explore the new and innovative ways in which patients and caregivers are helping drive progress for the rare disease community. For more information, go to the Summit website.

October 25-26
The Biotechnology Innovation Organization is hosting its annual BIO Patient and Health Advocacy Summit on October 25 to 26 at the Park Hyatt in Washington, D.C. This event brings together patient advocacy organizations, academia, regulators, biotechnology industry, and other stakeholders for two days of robust programming to discuss timely policy issues and share best practices. For more information, visit the Summit website.


If you have an event you’d like added to this calendar, send us an email

This page was last updated January 17, 2018


Filed Under: Calendar, Get Involved, Rare Community

Speak Your Mind



Follow us on Twitter