Upcoming Events on the Rare Calendar

October 24
MATTER Workshop: Negotiating Sponsored Research Agreements will be held Wednesday, October 24, from 9:30 a.m. to 11 a.m. CDT at MATTER, 222 W Merchandise Mart Plaza #1230 in Chicago. Negotiating sponsored research agreements can be a challenging process for innovators, especially when dealing with indemnification, confidentiality and publication of data, intellectual property and termination clauses. Complexities such as these can affect the length of negotiations as well as represent one of the largest impediments to formalizing research agreements. The workshop can be attended virtually through Webex. The price for the live event is $25 and the price for the virtual event is $15. For more information and to register, go to the event registration page.

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.

November 3-4
The CRPS Convention is a two day event which begins on Saturday, November 3 in front of Sleeping Beauty’s Castle in Disneyland for a meetup and community picture at 4 p.m., meetup for teens living with CRPS, and The CRPS Convention Welcome Dinner and Ceremony to recognize and honor leading doctors who specialize in CRPS at Disney’s Paradise Pier Hotel at 6 p.m. The CRPS Convention and CRPS Convention Talks will take place on Sunday, November 4, 2018 from 10 a.m. to 5 p.m. and will feature vendors and speakers who are dedicated to supporting The CRPS Community. On Sunday afternoon, CRPS will honor the attendee who shows the most spirit, the attendee who is most active on social media for the convention, and the most creative booth. Proceeds from the events will benefit education, research, and awareness for CRPS. For more information and ticket, visit the convention website.

November 7
The National Health Council will host a webinar titled, “Patient- Reported Outcomes and Patient-Centered Outcomes: Is There a Difference?” on November 7, from 1:00 pm-2:00 pm. The webinar will discuss the difference between patient-centered outcomes and patient-reported outcomes, and why we need patient centered outcomes in research and care. For more information and to register go to the event website.

November 10
Rare New England is hosting its second annual conference, Improving Healthcare Experiences in the Rare Disease Community at Cambrooke Therapeutics in Ayer, Massachusetts. Conference Attendees will learn how to utilize effective communication strategies with their medical teams, how to identify available resources in the rare disease community, and how to identify clinical trial possibilities and how to overcome obstacles relating to them.  Attendees will also learn how to collaborate with schools, families, and medical professionals to meet educational needs of children with genetic diseases. There will be networking opportunities and more.  In collaboration with Next Steps, there will be a Teen Event that will provide an opportunity for teens and young adults to meet, share their stories, learn tools to help transitioning into adulthood, and simply laugh and have fun. A children’s watch area will be provided to enable caregivers to participate in presentations and welcome children to meet and engage through fun and activities.  For more information on speakers, agenda, and link to registration, please visit the conference website.

November 19
The Reagan-Udall Foundation for the Food and Drug Administration will hold a meeting for representatives from government, industry, physicians, patients, and advocacy groups on Leveraging Real-Word Treatment Experience from Expanded Access Protocols. The meeting will be held Monday, November 19 from 10 a.m. to 4:30 p.m. at the U.S. Food and Drug Administration White Oak Campus, Building 31, Great Room, 10903 New Hampshire Avenue, Silver Spring, Maryland. For more information or to register, go to the event page.

November 30-December 1
RAREfest18, a two-day festival hosted by the Cambridge Rare Disease Network in the United Kingdom, will shine a light on some successes and innovative solutions that are striving to address the way rare disease patients are diagnosed, treated, and supported. RAREfest will raise awareness of rare conditions and bring together all stakeholders in the rare disease community alongside the general public from across Cambridgeshire and beyond. The event will be held at the Guildhall in Cambridge. Tickets are free. For more information, visit the CRDN website.

January 22-23
Expanded Access 2.0, the Second Annual National Forum on Pre-Approval Access, will be held at the National Press Club in Washington, D.C. on January 22 and 23. The forum will explore the integration of treatment-use trials into the clinical development of new therapeutics for serious diseases. To view the agenda or register, go to the conference 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


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