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You are here: Home1 / Retinoblastoma Resource2 / Other Organizations3 / Disability Support
A child life specialist uses a toy cat with removable eye to help a young girl receiving chemotherapy cope with eye removal and artificial eyes.

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Disability Support Resources

Many wonderful organizations around the world bring help and hope to children affected by cancer, their families and adult survivors.

The following is a selection of resources that we think may be valuable to you. We hope this directory will grow in time to include resources in many countries.

If you know of a good resource not listed within these pages, please email web@wechope.org with the information so we can look into listing it.


American Foundation for the Blind

Connects families with knowledge and support, advocates and supports development of accessible products, creates and distributes accessible publications and resources for sighted supporters, advocates for legislative developments like the Americans with Disabilities Act.


Blind Children’s Fund (USA)

Produces educational materials for families and professionals working with blind and visually impaired children.


Calibre (UK)

Calibre Audio Library is a national charity providing a subscription-free service of unabridged audio books for adults and children with sight problems, dyslexia or other disabilities, who cannot read print.


Clear Vision (UK)

A UK postal lending library of over 13,000 mainstream children’s books with added braille. Our books all have braille (or Moon), print and pictures, making them suitable for visually-impaired and sighted children and adults to share.


Disability Rights Education and Defense Fund (USA)

Works to protect and advance the civil rights of people with disabilities Provides information on disability rights and offers assistance in making complaints.


Disabled Sports USA

Provides opportunities for individuals with physical disabilities to gain confidence and dignity through participation in sports, recreation, and related educational programmes.


Job Accommodation Network (USA)

Provides information and consultation on various aspects relating to access to employment and education.


Kids Together (USA)

Based in Pennsylvania, provides extensive online information and resources for families of disabled children.


Learning Disabilities Association of America (USA)

A network of parents, professionals, and individuals with learning disabilities. Runs local chapters and provides educational materials.


Living Paintings (UK)

Designs, creates and publishes tactile and audio books for blind and partially sighted people. ‘Touch to See’ books titles cater to all from pre-school to adult, and are available through a free postal library.


Look (UK)

Provides practical advice, emotional support, information, family activities and friendship with other parents who have a visually impaired child.


National Association for Parents of Children with Visual Impairments (USA)

A parent-run initiative providing emotional support, outreach programmes and networking, and advocates for the educational needs and welfare of affected children.


National Blind Children’s Society (UK)

Supports blind and visually impaired babies, children and young people in full time education. Services include emotional and practical support, education support, mobility and life skills training, large-print books for children, advice on technology and sensory equipment and funding sources.


National Organization of Parents of Blind Children (USA)

A division of the National Federation of the Blind, NOPBC provides all manner of support and advocacy for families of visually challenged youngsters.


Royal National Institute of Blind People (UK)

The RNIB provides information, advice, emotional and practical support and advocacy for anyone affected by sight loss across the UK, and those around them.


Sightline (UK)

A searchable directory of local services helping blind or partially sighted people.


VICTA (UK)

Provides emotional and practical support to blind and partially sighted children, young people (up-to 29 years old) and their families across the UK.

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  • Retinoblastoma Overview
    • How the Eye Works
    • Retinoblastoma Biology
    • Unilateral Retinoblastoma
    • Bilateral Retinoblastoma
    • Extraocular Retinoblastoma
    • Trilateral Retinoblastoma
    • Genetics of Retinoblastoma
    • Global Incidence
    • Signs and Symptoms
    • Referral and Diagnosis
    • Treatments
    • Care After Treatment
    • Prognosis
    • Retinoblastoma Glossary
  • Know the Glow
    • Fundal (Red Eye) Reflex and Red-Eye Reduction
    • White Eye Reflex
    • Photo Challenge
    • White Eye and Rb
    • White Eye after Rb Diagnosis
    • White Eye and Adults
    • PhotoRED Technique
    • Next Steps
    • Examining the Fundal / Red Reflex
  • Medical Care
    • Questions to Ask the Medical Team and Yourself
    • Diagnosis and Staging
      • Staging Systems
      • Multidisciplinary Team and Tumour Board
      • Treatment Plan and Care Pathway
      • Hospital Packing Tips
    • Retinoblastoma Genetics
      • Rb Genetics Explained
      • Mosaic Mutations
      • MYCNA Retinoblastoma
      • Genetic Counseling
      • Genetic Testing
      • Genetic Test Results
      • Pre-implantation Genetic Diagnosis (PGD)
      • Genetics Glossary
    • A Therapeutic Alliance
      • Your Child’s Doctors
      • Good Communication
      • Resolving Conflict
      • Second Opinions
      • Changing Doctors
      • Medical Staff
    • Medical Procedures
      • Informed Consent
      • Procedure Pain
      • Blood Draw
      • Bone Marrow Aspiration
      • Bone Scan
      • Chest X-ray
      • CT Scan
      • Echocardiogram
      • EUA
      • Eye Pressure Test
      • General Anaesthetic
      • Hearing Tests
      • Inserting an IV
      • Intrathecal Injection
      • Lumbar Puncture
      • MRI Scan
      • Radionuclide GFR
      • Subcutaneous Injection
      • Taking a Temperature
      • Transfusion
      • Ultrasound of the Eye
      • Vision Testing
      • Vision Testing – Support Your Child
      • Vision Testing – Just For Kids!
    • Treatment
      • Risk of Under-Treatment and Over-Treatment
        • Reduce Risk of Under-Treatment and Over-Treatment
      • Treatment Decision Making Guide
        • Step 1 – Acknowledge Your Thoughts and Feelings
        • Step 2 – Understand Your Decision-Making Style
        • Step 3 – Find Your Expert Team
        • Step 4 – Understand Shared Decision Making and Informed Consent
        • Step 5 – Set an Intention to Make Balanced Decisions
        • Step 6 – Learn About Retinoblastoma
        • Step 7 – Evaluate Your Options
        • Step 8 – Consider Your Values and Goals
        • Step 9 – Manage Disagreement and Conflict
        • Step 10 – Make Your Decision
        • Step 11 – Review Your Decision
        • Step 12 – Support Your Child and Yourself
        • Review the 12 Decision Making Steps
      • Enucleation
        • Making the Decision
        • Eye Removal Surgery
        • Orbital Implants
        • Types of Orbital Implant
        • Side Effects
        • Pathology
        • After Surgery
        • Coping with Other People
        • Artificial Eyes
        • Artificial Eye Care
      • Focal Therapy
        • Laser
        • Cryotherapy
        • Periocular Chemotherapy
        • Intravitreal Chemotherapy
      • Chemotherapy
        • Chemotherapy for Rb
        • Intra-Arterial Chemotherapy
        • Regimens and Protocols
        • During Treatment
        • Central Venous Catheter
        • CVC Care and Risks
        • Blood Test Results
        • When to Call the Doctor
      • Radiation Therapy
        • Radioactive Plaque
        • Coping With Isolation
        • Radiotherapy
        • Radiotherapy Planning
        • Treatment Process
        • EBRT Side Effects
        • Ask the Doctor
      • Transplant
        • Types of Transplant
        • Transplant Process
        • Coping With Transplant
        • Complications
        • Long-term side effects
        • Ask the Doctor
      • Side Effects
        • Low Blood Counts
        • Pneumonia and Chickenpox
        • Protect Your Neutropaenic Child
        • Pets and Infection Risk
        • Fatigue
        • Pain
        • Hair Loss
        • Nausea and Vomiting
        • Taste Changes
        • Oral Care
        • Skin and Nails
        • Diarrhoea
        • Constipation
        • Bed Wetting
        • When to Call the Doctor
      • Occlusion Therapy (Eye Patching)
        • Introduction to Eye Patching
        • Preparing to Patch
        • Support Your Patching Child
        • Eye Patching – Just For Kids!
    • Clinical Research
      • Clinical Research Introduction
      • Clinical Research Phases
      • Protocol Document
      • Monitoring and Safety
      • Rb Clinical Research
      • Informed Consent
      • Ask the Investigator
      • Ethnography Research
      • Patient-Led Research – A New Approach
      • Patient-Led Research – Challenges and Development
    • Surviving Hospital
      • Advocate for Your Child
      • Packing for Hospital
      • Hospital Life
      • Your Child’s Space
      • Record Keeping
      • Recreation
    • International Care
      • Contacting Doctors
      • Finances and Fundraising
      • Travel and Housing
      • Questions to Ask
    • End of Treatment
      • Celebration
      • Follow Up Care
      • Follow Up Schedule
      • Life-Long Follow Up
      • Removing the Central Line
      • A New Normal
      • Relapse
      • Second Primary Cancers
      • Symptoms of Second Primary Cancers
      • Ask the Doctors
    • End of Life Care
      • Changing Treatment Goals
      • Palliative Care
  • Child Life
    • Child Life is More Than Play
      • The Art of Child Life
    • Procedure Support
      • Stay Calm
      • Make a Plan
      • Medical Play
      • Distraction Play
      • Comfort Positions
      • Giving Eye Drops
      • Support for Needle Procedures
      • Anaesthetic Induction
      • Preparing for Surgery
      • Preparing for Enucleation
      • Imaging Scans
      • HandWashing for Kids
      • Reduce Face Touching
    • Pain Management
      • Know the Signs of Pain
      • Manage Pain
      • Mind-Body Strategies
    • Living With a Special Eye
      • Before Enucleation
      • Going to the Ocularist
      • Making an Artificial Eye
      • Handling the Special Eye
      • Keeping the Eye in Place
      • The Young Child Living With a Special Eye
      • The Older Child Living With a Special Eye
      • When There Is No Eye
    • Psychological Support
      • Reduce Your Stress
      • Infant Massage Training
      • Talking With Kids About Vision Loss
      • Talking About Vision Loss – For Kids!
      • Support and Encourage
      • Coping With Difference
      • Worry Eaters Guide
      • Personal Story Books
      • Youth Retinoblastoma Support at Upopolis
      • Camp Sunshine Rb Week
      • Activities for Isolating With Children
      • Post-Traumatic Stress Disorder in Childhood Cancer
  • Living With Retinoblastoma
    • Children
      • Children Learn From You
      • Sibling Responses
      • Support Siblings
      • Communicate
      • Reduce Stress
      • Tantrums
      • Discipline
    • Parents
      • Emotional Responses
      • Manage Anger
      • Depression and PTSD
      • Look After Yourself
      • Relationships
      • Sharing the News
      • Update People
      • Seek and Accept Help
    • Grandparents
      • Genetic Implications
      • How You Can Help
      • Look After Yourself
    • School Life
      • Effects of Treatment
      • Preparing For School
      • School Activities
      • Artificial Eye Care
      • Infection Control
      • Older Children
      • Advice for Teachers
    • Eye Care
      • Prevent Eye Injury
      • First Aid for the Eyes
      • Nutrition for the Eyes
    • Bereavement
      • End Of Life Care
      • Before the Funeral
      • Acts of Remembrance
      • Parental Grief
      • Sibling Grief
      • Carrying the Torch
    • Focus on Hope
      • False Hope
      • Encourage Hope
      • The First Alphabet of Hope
      • Alphabet of Hope 2018
      • Alphabet of Hope 2019 – #LifeBeyondRb
      • Alphabet of Hope 2020 – #FamilyInSight
      • Alphabet of Hope 2021 – #MindAndBody
      • Alphabet of Hope 2022 – #RbCare
      • Alphabet of Hope 2023 – #RbResearch
      • Alphabet of Hope 2024 – #RbEarlyDiagnosis
      • Alphabet of Hope 2025-2026 – #RbChildLife
  • Family and Friends
    • Practical Support
    • Emotional Support
    • Financial Support
    • Giving Gifts
    • Help From Young Friends
    • Words That Help
    • Words That Harm
    • Help During the Holidays
  • Through Our Eyes
    • RAE of Hope
    • Unilateral Rb
      • John (Kenya)
      • Rati (Botswana)
      • Connor (Canada)
      • Ewan (England)
      • Rowan (USA)
      • Bisrat S (Ethiopia)
      • Alexa (Ireland)
      • Linda (Kenya)
      • Lele (China)
      • Katelyn (USA)
      • Jordan (USA)
      • Danielle (Canada)
      • Bright (Cameroon)
    • Bilateral Rb
      • Daisy (UK)
      • Aidan (Canada)
      • Libby and Ella (USA)
      • Angie, Kieran and Cameron (UK)
      • Bisrat E (Ethiopia)
      • Abby (USA)
      • Brady (USA)
      • Sera (Fiji)
      • Katy and Harry (UK)
      • Hope (South Africa)
      • Ross Richard (USA)
      • Bella (Philippines)
      • Peter (Kenya)
      • Jaymee (Australia)
      • Ella Nina (Burundi)
      • Ernest (Kenya)
    • Extraocular Rb
      • Rati (Botswana)
      • Ross Richard (USA)
      • Bella (Philippines)
      • Sera (Fiji)
      • Ella Nina (Burundi)
      • Ernest (Kenya)
      • Bright (Cameroon)
    • Trilateral Rb
      • Libby and Ella (USA)
  • Other Organizations
    • Rb Communities on Social Media
    • Retinoblastoma Organizations
    • Childhood Cancer
    • General Cancer Support
    • Emotional Support
    • Financial Support
    • Transport Providers
    • Hospital Housing
    • Support for Children
    • Support for Siblings
    • Support for Survivors
    • Cancer Camps
    • Wish Granting
    • Disability Support
    • Bereavement Support
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Retinoblastoma

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Canada

Special fund at the University Health Network

Who We Are

  • Our Mission, Values, and Goals
  • Our History
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UK

Registered Charity #: 111-11-33

What We Do

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USA

501(c)(3) National Non Profit - EIN: 45-4886827

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