Guidance & Support

FORGE offers guidance and support to individuals and families living with a rare genetic disease

Living with a Rare genetic disorder

In those first few moments of receiving a diagnosis of a rare genetic disorder for yourself or for your child, the news can be devastating. A huge element of this will be the unsurety and lack of knowledge about what is involved. Perhaps it has also taken some time to reach the diagnosis, with worry and difficulties that have preceded it. But there is some comfort in diagnosis. Now you have a position from which you can move forward. You will find there is help available and also that modern technology is moving forward at a pace to support those affected by these conditions. Please search our resources and opportunities to link with others similarly affected as the start of this process for your family.

Understanding RGDs & SAVI

FORGE is starting with rare condition SAVI and you will find up to date information about research and clinical treatment relating to this across this website. You are also an important part of this process, as we all increase and share our knowledge together. Please contribute your own experiences to add to the peer support for RGDs and SAVI that are so important in helping to understand and manage these conditions for everyone affected.

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Let us guide you

Parents & Caregivers

Managing a disorder Dealing with doctors and medical teams Learn more about

Adult Patients

Living with a disorder Dealing with doctors and medical teams Learn more

Kids Corner

Medical professional

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Resources for you

Resource 2 mins read

If you are here –

Take a moment. Breathe. A rare diagnosis can feel isolating—but you are

Resource 4 mins read

Useful Doctor’s Visit Checklist

SPECIALIST APPOINTMENT PREPAREDNESS Facilitating clear communication for ultra-rare conditions. 1. DETAILS Childs

Resource 4 mins read

Oxygen and respiratory support especially for people living with rare genetic errors

Some rare genetic conditions such as SAVI syndrome, surfactant protein deficiencies, alpha-1

Resource 4 mins read

Genetics testing

Advanced genetic tests have revolutionized the way doctors can diagnose and understand

Resource 6 mins read

Advice for patients and families before getting a diagnosis of a rare genetic condition

Before a rare genetic condition gets diagnosed, it can feel isolating and

Resource 3 mins read

Understanding Inflammation

Inflammation is your body’s natural response to injury or infection such as

External Resources

Please contact us if you would like our support identifying other charities and organisations that can help you in managing your rare genetic condition.

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