Helpful resources:

We understand that living with a rare condition can bring up so many questions, including, but not limited to:

  • What is PROS?
  • How will my child cope with living with this?
  • How will I as a parent cope with this?
  • How can I help my other children / siblings?
  • I need specialised clothing &/or shoes, where can I go for these?
  • I feel like I am the only one, are there support groups out there?
On this page you will find various websites & articles that we hope may help.

WHAT IS PROS?

Please click on the links below for further information:

WHAT IS PROS

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Guide to Expanded Access  We know living with PROS can be very challenging & gaining access to medication even more so. Especially if there are no planned clinical trials in your country but you know of medication that has been used in other countries that could help. This guide to Expanded Access maybe of help to you.

  • (For patients who are seriously ill and have exhausted available treatment options, and are not eligible
    for clinical trials, Expanded Access may be a potential option to explore with their physician. In response
    to patient feedback, Janssen created the Guide to Expanded Access (Guide) to support patients,
    caregivers and health care providers in Canada and European countries seeking information about
    Expanded Access. In collaboration with patient representatives, this Guide was created to support
    anyone in search of country-specific information about Expanded Access (EA), also known as
    Compassionate Use, or Pre-Approval Access (PAA).

PSYCHOLOGICAL WELL BEING & SUPPORT:

Changing Faces  – This is a very informative website: We offer a wide range of Self-Help for adults, families and young people learn new techniques to handle living with an unusual appearance.

This includes advice on how to live with confidence, enjoy healthy relationships, prepare for school, handle bullying and feel confident about seeking work.*PLEASE NOTE THIS RESOURCE IS FOR ANYONE WITH A VISUAL PHYSICAL DIFFERENCE*

Coping with Unwanted Advice about Your Child’s Medical Condition  – Suggestions on how you might deal with comments or advice that people sometimes like to offer!

Living with a rare condition: the effect on mental health

PeaceLoveHeal – A blog about living with CLOVES (A condition within PROS)

Band-Aids & BlackboardsThis is a site about growing up with medical problems. It’s goal is to help people understand what it’s like, from the perspective of the children and teens who are doing just that. These kids have become experts at coping with problems that most of you have never heard of & they’d like you to know how they do it.

Disarming Disability – Disarming Disability Podcast was founded in 2019. The podcast’s mission is to powerfully deconstruct disability through candid conversations with experts exploring topics related to disability. The podcast looks to educate, empower, voice, and build a more inclusive society.

CLOVES Syndrome support page  – There are some great links on this page as well as 2 publications created for kids with CLOVES

Spikes – and other ways disabled people combat unwanted touching– Bronwyn Berg became so fed-up with people manhandling her without asking, she put spikes on her wheelchair. And she’s not alone. With a spate of disabled people reporting unwanted touching some are taking action to stop it in its tracks.

4 Families take on rare disease – Confronted by illnesses that most scientists overlook, these families had to work out their own approaches to finding treatment.

Meeting People When You Have a Visible  Difference – Exploring why meeting people when you have a visible difference can be difficult & ways to possibly deal & cope with this.

EXPLAINING PROS TO CHILDREN: Please see the following links from Novartis: https://www.understandingpros.com/talking-about-pros/

“The PROS” Comic Book

Follow a team of superheroes-in-training called “The PROS,” who each have a unique PROS condition. Together with their teacher, Professor P, The PROS help other kids living with PROS find support and community. For ages 8 years and up.

The PROS Comic Book

 

PROS Pals Workbook – Making connections at school

This printable workbook is full of fun and engaging activities, like fill-in-the-blanks, coloring, and connect-the-dots, that are designed for your child to complete with a peer to help them build shared understanding, empathy, and friendship. For ages 5 years and up.

PROS Pals Workbook

Glossary of PROS Terms

Does your child have questions about PROS terms or some of the words they hear at doctors’ appointments? This glossary includes easy-to-understand definitions of common PROS medical and diagnostic terms. For ages 8 years and up.

Glossary Of Terms

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Navigate conversations about PROS

The way you and your child discuss PROS with others will vary depending on whom you are speaking with and the goal of the conversation. The following 3 guides will help you effectively communicate at home, school, and the doctor’s office.

Talking About PROS

Not sure how to explain PROS? Want to share your experiences or explain why you don’t feel like answering questions? This guide includes tips for how to have effective conversations about PROS. For ages 12 years and up.

Talking About PROS

 

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Talking About PROS at Home

PROS impacts the whole family. Check out these tips for starting a conversation with your children about PROS. For parents/caregivers.

Talking About PROS At Home

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Talking About PROS at School

Classmates and teachers often have questions about PROS. This printable note card includes tips to help children decide what they want to share about PROS. For ages 8 years and up.

Talking About PROS At School

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Talking About PROS at the Doctor’s Office

Make the most of upcoming appointments, and get tips for talking about PROS symptoms. For parents/caregivers and young adults.

Talking About PROS At The Doctors Office

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CLOTHING & SHOE COMPANIES:

Bespoke Shoe Maker – I have used this company myself for many years & they are extremely good at creating footwear for complex conditions. Based in Derbyshire, UK.

Clothing Solutions – I have used this company to make me a pair of combat trousers, something I always wanted growing up! Lovely people with a lot of knowledge. Based in Bradford, West Yorkshire.

REENA Tailoring: used by one of our GoPI3Ks members & comes highly recommended: Unit A, Wellfield Court, 31 Pen-Y-Lan Road, Cardiff CF24 3PG. Phone: 029 2045 2040 Email: reena.tailoring@gmail.com

CLOVES Syndrome footwear resourceA great resource of information on footwear available in the USA. From bespoke companies to advice on mainstream companies that offer extra wide footwear & those that also sell 2 different size shoes.

ACCESSIBILITY GUIDES:

AccessAbleLooking for access to such things as restaurants, cinema’s hotels, universities & more within the UK, then this is the site for you.