About us
Imagine waking up one day and finding yourself among the 1 in 17 people in the UK living with a rare disease. That’s the day-to-day reality for many of our brothers and sisters in the UK, with over 7000 different rare diseases knocking on doors unannounced.
Every parent dreams of watching their children reach their developmental milestones. However, the reality for our parents is that their children may be developmentally delayed from crawling and walking to babbling and speaking short sentences. When those milestones are not met, panic sets in and questions begin. Is my child ok? Why are they different? Why are they not walking or talking yet? What have I done wrong? We were only at the doctors last week, why haven’t things improved?
Our lived experiences are the one thing that we all share in common to finding and understanding our condition and our journey to our diagnosis based on our symptoms is the one thing that does not define us, but will give us all a piece of mind.
Services
Patients, Families and Carers
- Free 1:1 Consultations
- Action Plans
- Supporting letters for referrals and genetics.
Education
(Schools, Colleges and Universities)
- Refer students, families and carers for peer support
- Develop your understanding of Autoinflammatory conditions – know the signs
- Invite us to EHCP meetings, family support meetings
Medical Professionals
- Refer patients, families and carers for peer support via our referral form
- Develop your understanding of Autoinflammatory conditions – know the signs
- Present your research of Autoinflammatory conditions to our community
Social Care
- Refer clients, families and carers for peer support
- Develop your understanding of Autoinflammatory conditions – know the signs
- Invite us to join family support meetings with schools, health care and early help etc.
Testamonials
