Join our Priority Setting Steering Committee

Building on the success of a national retinoblastoma patient engagement strategy, Dr. Helen Dimaras at SickKids is establishing a study that aims to determine the “Top 10” retinoblastoma research priorities.

This project will be led by a national multidisciplinary steering committee. Please consider joining the steering committee if you are:

  1. Someone who has been diagnosed with retinoblastoma
  2. A relative or friend of someone diagnosed with retinoblastoma
  3. A health professional or researcher with an interest in retinoblastoma.

Steering committee members are asked to participate in a monthly meeting (in person at SickKids or via video conference) on the second Tuesday of the month for 1 hour. The study is scheduled to be completed in December 2017.

If you are interested in joining our steering committee, or want more information, please email retinoblastoma.research@sickkids.ca. Otherwise, you will hear about other opportunities to be involved when the study formally opens up.

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One Retinoblastoma World Conference 2017

By: We C Hope

We encourage the generation and use of robust scientific evidence to guide care.

1rb world

One Retinoblastoma World is a global network with the bold idea that all children with RB can have equal opportunity to access optimal care. When diagnosed early and treated effectively, childhood eye cancer is curable. No child should die, or suffer avoidable blindness because of it.

Many challenges impede scientific research needed to develop evidence based care, but One Retinoblastoma World is breaking down those obstacles.

This year’s program evolved from 10 questions commonly asked by parents and survivors.  Each question will be explored in depth through a combination of presentations, open floor discussion and small-group breakout sessions.

Providing educational and networking opportunities for all stakeholders, this working meeting will focus on building connections and collaborations to advance care for all children, survivors and families.  Engaging clinicians, researchers, families and survivors together will create shared learning and novel partnerships.

World Eye Cancer Hope USA founding board member and One Retinoblastoma World conference chair Marissa Gonzalez is most excited about the Family Social Day.

“Bringing together parents, patients and survivors in person for the first time on a national and international scale in the USA will be an incredible opportunity for learning, bonding and in many cases healing from shared experiences. For some, it will be the first time they meet a fellow RB survivor – forging these new relationships and strengthening existing ones will be an incredible experience for all involved.” – Marissa Gonzalez

Lower registration fees are available for clinicians from Low and Lower-Middle Income Countries, and for parents and survivors, to enable vital inclusive global collaboration.

For further information about this year’s meeting, please visit the following pages.

Please join us in Washington D.C. this October. Be part of the best future we can create for all children, survivors and families affected by childhood eye cancer, and those who care for them.

2017 Meeting

Crystal City Marriott

Washington D.C., USA

(Arlington, VA)

Family Social Day: Monday October 9

Full Program: October 10 – 11