Rare Disease Diagnostics Summit | Kisaco Research

Reducing the diagnostic odyssey to improve patient outcomes

View our agenda
Boston, MA
24-25 September, 2019

Join multinational and national pharmaceuticals, biotechs, diagnostics, and patient advocacies in Boston as we tackle the diagnostic odyssey.

"Diagnosis is absolutely the first step in treating a rare disease" - Durhane Wong Rieger, President & CEO, Canadian ORganization for Rare Diseases

Why Attend

The diagnostic component of genetic rare diseases must be addressed. More than 350 million people are living with a rare disease. On average it takes 7 different consultations before an initial referral to a clinical geneticist and a minimum of 5 years to completely diagnose a patient, with 70-90% of cases going undiagnosed. With roughly 7,000 known rare diseases, 80% have a genetic crisis.

The numbers are clear, and it’s time to act now.

This event will bring together drug companies, patient advocacies, diagnostic providers, insurance companies, and other key stakeholders to facilitate earlier and better diagnosis of rare genetic diseases.

This event will enable partnerships between diagnostic and pharma companies for companion diagnostics, provide a platform for industry to build the much-needed relationships with patient advocacies, and facilitate knowledge-sharing on genetic discovery, biomarkers, disease mechanisms, and novel strategies to improve early rare genetic disease diagnosis.

Who Will Be There

30%
Pharma
25%
Diagnostics
25%
Patient Advocacies
20%
Other (Data Repositories, CROs, Academics & Clinicians, Consultants)

Pharma

Diagnostics

Patient Advocacies

Other (Data Repositories, CROs, Academics & Clinicians, Consultants)

The Speakers

 

Tom Defav

Director, Data Sciences, Genomics, and Bioinformatics
Chief Commercial Officer

Tom Defav

Director, Data Sciences, Genomics, and Bioinformatics
Chief Commercial Officer
 

Durhane Wong-Riefer

President & CEO
Canadian Organization for Rare Diseases

Durhane Wong-Riefer

President & CEO
Canadian Organization for Rare Diseases
 

Harsha Rajasima

Co-Founder, Board Director
Organization for Rare Diseases India

Harsha Rajasima

Co-Founder, Board Director
Organization for Rare Diseases India
 

Peter Goodhand

Chief Executive Officer
GA4GH

Peter Goodhand is a leader in the global health sector as a senior executive and board member.

 

Goodhand played a key role in the creation of the Global Alliance for Genomics and Health (GA4GH) and was appointed as its founding Executive Director in 2014, and as Chief Executive Officer in 2018. From May 2016 to April 2018, he also served as the President of the Ontario Institute for Cancer Research (OICR).

Peter Goodhand

Chief Executive Officer
GA4GH

Peter Goodhand is a leader in the global health sector as a senior executive and board member.

 

Goodhand played a key role in the creation of the Global Alliance for Genomics and Health (GA4GH) and was appointed as its founding Executive Director in 2014, and as Chief Executive Officer in 2018. From May 2016 to April 2018, he also served as the President of the Ontario Institute for Cancer Research (OICR).

Prior to the GA4GH and OICR, he was the President and Chief Executive Officer of the Canadian Cancer Society, Canada's largest health charity. Before joining the charitable sector, Goodhand had a 20 year career in the global medical technology industry, including strategic leadership roles with multinational healthcare companies such as American Cyanamid and Johnson & Johnson; Board Chair and President of Canada’s Medical Device Industry association (MEDEC); and as the founding Managing Director and then Board Chair of the Health Technology Exchange (HTX).

Goodhand is currently a member of the Occupational Cancer Research Centre Steering Committee, Co-chair of the Medical and Scientific Advisory Board of Global Genes, Co-chair of the International 100K+ Cohorts Consortium (IHCC), and a member of the of the Global Genomic Medicine Collaboration (G2MC) Steering Committee.

He chaired the Government of Canada’s Expert working group on the future of medical isotope production, and was a member of the Canadian delegation to the UN summit on non-communicable diseases.

 

Clifford Goldsmith

Managing Director, US Provider Industry, Healthcare
Microsoft

Clifford Goldsmith

Managing Director, US Provider Industry, Healthcare
Microsoft
 

David Sandak

President & Co-Founder
Pattern.org

David Sandak

President & Co-Founder
Pattern.org
 

Tara Mathiesen

Director, US Diagnostics
Orchard Therapeutics

Tara Mathiesen

Director, US Diagnostics
Orchard Therapeutics
 

Joanne Hackett

Chief Commercial Officer
Genomics England

Joanne Hackett

Chief Commercial Officer
Genomics England
 

Charlotte Hartman

Senior Director, Advocacy & Policy
EveryLife Foundation for Rare Diseases

Charlotte Hartman

Senior Director, Advocacy & Policy
EveryLife Foundation for Rare Diseases
 

Jill Sisco

President
Acromegaly Community

Jill Sisco

President
Acromegaly Community
 

Sarah Shira Emmons

Director of Global Patient Outreach & Community Strategies
The Jain Foundation

Sarah Shira Emmons

Director of Global Patient Outreach & Community Strategies
The Jain Foundation
 

Julie Raskin

Executive Director
Congenital Hyperinsulinism International

Julie Raskin

Executive Director
Congenital Hyperinsulinism International
 

Janine Lewis

Senior Project Manager
Cancer Information Analysis Tracking (CIAT)

Janine Lewis

Senior Project Manager
Cancer Information Analysis Tracking (CIAT)

The Agenda

Rare Disease Diagnostics Summit Front Page

Our Agenda

Media Partners

Become a Sponsor

Kisaco Research provides the much needed platform on which industry executives can network, connect and learn from each other as well as meet potential industry partners.

Far from the typical ‘meet-and-greet’ exhibition experience, you – as a sponsor or exhibitor – will be positioned as a partner of the event with a focus on the benefits of your product and brand, rather than just a name on an exhibition list.

With our extensive marketing experience and strategy, your partnership with Kisaco Research will grant you a sponsorship package that is an extension and enhancement of your current marketing and branding efforts. We value your ROI and will work with you directly on your specific goals and targets – that’s why we take special care in finding the most relevant end-users to attend, so that your financial and resource investment is smartly allocated.

Find out more by calling us at +44 (0)20 3696 2920 or email us at partner@kisacoresearch.com.

Venue

Boston

Venue and accommodation TBC

Conference Packages

Sending Your Team? Group Discounts Available!

Applicable for Primary Market, Service Provider and Industry Rates Only. Not available for Academic or ‘Start-Up’ rates

Book a Team of 3+ - Save an Additional 10% Off
Book a Team of 5+ - Save an Additional 15% Off

If you would like to register a team of 3 or more, please email [email protected] for your discount coupon code before registering. PLEASE NOTE: Discounts cannot be combined with Early Bird Pricing or any other discount or offer. If you have any questions about your registration, please call us on +44 (0)20 3696 2920

We accept the following cards through Worldpay:
Tuesday, April 30, 2019 to Friday, July 12, 2019
Patient Advocacy Rate
$299
Super Early Bird through July 12. Standard rate $499
Wednesday, April 3, 2019 to Friday, July 12, 2019
Academic rate
$799
Super Early Bird through July 12. Standard rate $1,199
Wednesday, April 3, 2019 to Friday, July 12, 2019
Pharma & Biotech rate
$1,699
Super Early Bird through July 12. Standard rate $2,199
Rate also includes: Genetic data repositories, Informatics Companies, and Data Analytics Companies
To increase your brand presence, contact Chris Stefanov, [email protected]
Wednesday, April 3, 2019 to Friday, July 12, 2019
Multinational rate
$1,999
Super Early Bird through July 12. Standard rate $2,699
Pharma & Biotech companies with over $100 million in annual revenue
To increase your brand presence, contact Chris Stefanov, [email protected]
Wednesday, April 3, 2019 to Friday, July 12, 2019
Vendor rate
$2,299
Super Early Bird through July 12. Standard rate $2,999
Service Providers
CROs & CMOs
Consultants
Diagnostics Companies
To increase your brand presence, contact Chris Stefanov, [email protected]
Preparing registration...

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Place of registration: London, United Kingdom
Company number: 09316521

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