Exploring the rare illness and disability world.

A dedicated hub for advocacy, support, CPD training, and resources that promote understanding of disabilities, carers, rare illnesses, and education.

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Advocacy & Resources

A dedicated space offering access to trusted resources, advocacy, and self-paced training.

Engage with a community area and an interactive space designed to support knowledge and understanding.

CPD Training

Self-paced course for professionals.

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Community Hub

Join our discussion forums and support groups.

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Interactive

Children can explore disabilities through an interactive space.

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Carers in the workplace course

Whether you are new to the topic or looking to deepen your understanding, this program offers a comprehensive guide to making your workplace carer-friendly.

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General posts

Do SEND family voices matter in consultations?

With so much on a parents plate already, would it be safe to assume that a consultant is someone who has our best interests at heart, and the outcomes they seek favour us more than annual targets?

Roberto Castillo

Mar 17

Person working at a desk with a computer, a cat, coffee, lamp and paperwork. To the right is a bookcase.

Is it possible to maintain a career when looking after someone with complex needs?

We live in a time where getting and keeping a job is becoming increasing difficult, and building a career is about constant reinvention of ourselves. To do that requires that we have focused minds and enough energy to fulfil our roles to the required levels.

Roberto Castillo

Jan 8

The words emotional blackmail over a dark blue background, with a head shape and puzzle behind.

Understanding Emotional Blackmail from Disabled Family Members

Emotional blackmail within families can be a difficult and painful experience. When a family member with a disability uses emotional pressure to influence decisions or behaviour, it can create complex feelings of guilt, obligation, and confusion. Luis has learnt how to use this on us even though he is non-verbal. The words emotional blackmail over a dark blue background, with a head shape and puzzle behind. What Is Emotional Blackmail? Emotional blackmai

Roberto Castillo

Dec 2, 2025

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Shared Stories

A pair of child's feet on the ground, showing a swollen right big toe.

JPsA -Juvenile Psoriatic Arthritis, how the rare disease affected a young child.

This story was shared by Michella so that others could not only be made aware of Juvenile Psoriatic Arthritis and Uveitis, but also some of the signs that may help to get your child diagnosed quicker especially if they are not talking.

Roberto Castillo

Jul 10, 2025

Marcus Hoenig sitting in his chair outside.

Against the odds: Startup life as a Disabled Entrepreneur

Motor neurone disease (MND) is a rare condition that progressively damages parts of the nervous system. This leads to muscle weakness, often

Roberto Castillo

Dec 18, 2024

Understanding Aphasia with Tom

Aphasia is the medical term for full loss of language, here Tom helps us to understand more about living with it.

Roberto Castillo

Oct 1, 2024

Parents and families

A man and a woman holding hands and walking near a river with orange flowers in front of them.

How couple's relationships are tested with disability

Couples tested with Disability. Ultimately couples get into a relationship not expecting to have children with disabilities and when they do they start to understand exactly how much they are capable of handling.

Roberto Castillo

Sep 5, 2025

Luis holding a rail in his wheelchair on a tram.

What challenges prevent families from going outside?

Most of us hate being stuck in one place, we like to move around and get a change of scenery now and then. What about those who are unable to, the ones we care for?

Roberto Castillo

Jun 24, 2025

Megaphone at the top of a speech bubble, with TOP 5 written below

Top 5 things to prioritise as a SEND parent

If you had to prioritise a top 5 list of being a SEND parent what would it look like? Here is mine based on experience, experience, experience and of course talking with others in a similar position to mine.

Roberto Castillo

May 8, 2025

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Rare illness posts

Rare Disease Day 2026

Each year on the last day of February people across the globe, come together to recognise and advocate for the 300 million plus individuals that live with a rare disease. Many people or organisations involved strive to impact the daily lives of those who live with a rare disease by educating the public and policy makers. This focus covers many areas such as improved care, social opportunities, better treatment and being treated as individuals. Why is it important? Many still

Roberto Castillo

Feb 23

A side shot of a female face displaying the absence of a nose.

Understanding Bosma Arhinia Microphthalmia Syndrome: Causes and Impacts

Bosma Arhinia Microphthalmia Syndrome (BAM Syndrome) is a rare genetic condition that profoundly affects facial development, especially the eyes and nose. This syndrome is marked by absent nasal structures (arhinia) and underdeveloped eyes (microphthalmia), among other anomalies.

Roberto Castillo

Oct 7, 2025