Skip to content
  • About
  • Shop
  • News
  • Contact Us
Search
NECA Logo
  • NET Nurse
  • Donate
  • What are NETs?
    • What are Neuroendocrine Cancers?
    • What are Pheos & Paras?
    • NET Symptoms
    • NET Types
    • Causes
    • Treatments
    • Grades
    • Diagnosis
    • Prognosis
    Consider the Grey Area
  • Patients & Carers
    • Patient & Carer Support
    • Patient Resources
    • Optimal Care Pathway
    • NET Nurse
    • Patient Stories
    • Share your Story
    • Australian NET Specialists
    • Clinical Trials
    • Living with NETS
    • Specialist Support Services
    Consider the Grey Area
  • Healthcare Professionals
    • Optimal Care Pathway
    • Professional Learning
    • Patient Referral
    • Clinical Trials
    • NET Symptoms
    • Australian NET Specialists
    • Request an In-Service
    • PLANET Registry
    • Order Booklets & Resources
    Consider the Grey Area
  • Get Involved
    • Advocate for Us
    • Share your Story
    • Donate
    • Fundraise
    • Events
    • In Memoriam
    • Corporate Partners
    • Gifts & Wills
    • Volunteer
    Senate MailChimp
  • March4NETs
NET Nurse
Donate

Home » Advocacy » INCA Patient Summit – Plovdiv Bulgaria

INCA Patient Summit – Plovdiv Bulgaria

  • August 24, 2016
With the 4th International Neuroendocrine Cancer Alliance (INCA) patient summit over for another year, we reflect on all that has been achieved and what is going on in the medical community with regards to NETs around the globe. 

The first day of the three day summit involved the welcoming of two new full member groups, the NET Patient Network (Ireland) and CNETs India. This brings the total of full member countries to 20 which is a great result. We are always looking at expanding the group as we look to how INCA can encourage and support (through experience and resources) developing nations to start NET Cancer patient groups.

The first day finished with the presentation, by Unicorn Foundation Australia, of this year's NET Cancer Day Awareness campaign, "Lets Talk About NETs". The campaign involves engagement by patients and their support groups within their local community to raise awareness through the use of branded take away coffee cups. We are asking everyone to get involved and make the most noise this year. Simply click here for more details and how you can register your interest.

Day 2 saw the group discussing:

Session One: INCA Strategic Pillars 

– INCA communications and branding strategy (Simone Leyden); INCA Membership strategy (Grace Goldstein); Collaborating with medical experts to advance research and elevate standards of care in NETs (Ron Hollander)

Session Two: Gold Standards of Care in NETs 

–  Latest Developments in NET treatment ENETs Guidelines (Dr Marianne Pavel, ENETs); ENETs priorities and prospective common platforms with INCA (Dr Bertram Wiedenmann, ENETs); European Reference Networks on NETs (Steven Bridges, ENETs consultant)

             

Session Three: New Trends in NET Diagnostics and Treatment

– What is new in Nuclear medicine on the NET arena (Prof Rod Hicks, Peter MacCallum); Access, opportunities and challenges to delivering Nuclear Medicine for NETs patients (Josh Mailman); Drug development trials round-up (Dr Piero Ferolla); The significance of patient involvement in clinical trials (Ron Hollander); AdVince: The Oncolytic Virus (Dr Magnus Essand)

AdVince:  update from Prof Magnus Essand of Uppsala University on the AdVince Oncolytic virus at the INCA patient summit in Bulgaria. The first patient has had 4 rounds of the treatment and there is mixed results, some tumour sites growing, some stable, and some reduced. As it is a phase 1 trial the dosage is very low so the researchers are happy to see as much impact as they are. They are now recruiting more patients (12) to the phase 11a. Currently it is focussing on liver metastases. 

       

 

Session Four: Ways to Collaborate with Medical Societies: How can we best work together? 

– Workshop and breakout sessions

Day 3 involved: 

Session Five: The Game-changing role of the patient voice 

– The COMMNETs model: patients at the table (Dr Ben Lawrence); The role of the NET nurse in empowering the patient (Cathy Bouvier); How we can best inform policy makers of the challenges facing NET patients (Simone Leyden).

Session Six: Exchange and Conclusions

– Wrap up of NET Cancer Day plans "Let's Talk About NETs", Bringing complicated issues closer to the patient: Trooper TV (Allen Wilson); Growing a NET patient group (Siobhan Conroy), New research opportunities (Ron Hollander); Struggles and hardships in NET patients advocacy (Yoshi Majima); Global NET patient survey: Next Steps 

 

We thank the organising committee and in particular Teodora our INCA President for hosting us in her beautiful homeland of Bulgaria. We look forward to sharing the video of the presentations as they become available. 

Share this post

Recent posts

Announcing our First Patient Ambassador – Cassie Miller

June 17, 2025

Bringing Together Experts to Improve NET Patient Care: NECA at the 5th NET Preceptorship

June 16, 2025

2025 Impact Report

June 16, 2025

Be the Voice for NET Patients in WA – Join Our CAG Team

June 10, 2025
Categories
  • Advocacy
  • Awareness
  • Community Events
  • Education
  • Events
  • Fundraising
  • General
  • In The Media
  • News
  • Research
  • Unicorn Events
PrevPrevious“Let’s Talk About NETs” this World NET Cancer Day Nov 10
NextThe loss of a true patient championNext

Related Posts

Announcing our First Patient Ambassador – Cassie Miller

NeuroEndocrine Cancer Australia is proud to welcome Cassie Miller from Queensland as our very first official Patient Ambassador. Cassie was 36 when she was diagnosed

Bringing Together Experts to Improve NET Patient Care: NECA at the 5th NET Preceptorship

NeuroEndocrine Cancer Australia (NECA) was proud to attend the 5th Neuroendocrine Tumour (NET) Preceptorship held 13 & 14th June at Peter MacCallum Cancer Centre in

2025 Impact Report

This year, NeuroEndocrine Cancer Australia continued to expand our reach and impact thanks to the incredible support of our community. Click below to read the

Be the Voice for NET Patients in WA – Join Our CAG Team

Call out for a consumer advisory representative from Western Australia (voluntary position) Are you from Western Australia? Have you experienced a diagnosis of a Neuroendocrine

View All

Subscribe to Newsletter

NECA Logo
registered charity badge

What are NETs

  • About Us
  • Our People
  • Our Ambassadors
  • Consumer Advisory Group
  • International Advisory Panel
  • Governance & Policies
  • About Us
  • Our People
  • Our Ambassadors
  • Consumer Advisory Group
  • International Advisory Panel
  • Governance & Policies

Patients & Carers

  • What are Neuroendocrine Cancers?​
  • Pheos and Paras
  • NET Library
  • What are Neuroendocrine Cancers?​
  • Pheos and Paras
  • NET Library

Healthcare Professionals

  • Patient resources
  • NET Nurse
  • Patient Stories
  • Australian NET Specialists
  • Current Open Clinical Trials
  • Patient resources
  • NET Nurse
  • Patient Stories
  • Australian NET Specialists
  • Current Open Clinical Trials

Get Involved

  • Shop
  • Donate
  • Volunteer
  • Current Fundraising Campaigns
  • Fundraise
  • Shop
  • Donate
  • Volunteer
  • Current Fundraising Campaigns
  • Fundraise
All charity donations to NeuroEndocrine Cancer Australia may be tax-deductible in Australia.

Registered Charity CFN 202607
© 2025 NeuroEndocrine Cancer Australia
  • Website by Five Creative
Twitter Facebook Youtube Instagram Linkedin