Rare Disease Day 2025: A Call For Universal Access And Coordinated Care
Children’s health risks becoming an afterthought, warn charities and Royal Colleges
MEDIA RELEASE – MONDAY 4 NOVEMBER 2024 (Children’s health risks becoming an afterthought, warn charities and Royal Colleges) · Major new funding for NHS is announced by Chancellor, but government fails to set out how investment will address huge delays in children’s health services. · Future of previous government’s flagship early years programme also unclear, […]
Rare Disease Quality Statements (A survey)
What does good care and treatment for rare disease mean to you? The rare disease quality statement project is asking the rare disease community to complete our survey, to develop a set of statements which clearly set out what high-quality, sustainable care, treatment and management look like for rare diseases. We need your support to […]
NHS commissioning: plans to April 2026
ITV News focus on failing education system for disabled children
3 mins read Thursday 25 July 2024 Tags: SEND system, education ITV News is placing the spotlight on Special Educational Needs and disability (SEND) today, 25 July. It reveals the impact of a failing education system for disabled children across its news channels. Research ITV carried out reveals that: Watch GMB interview with actor Sally Phillips who talks about […]
Living with Systemic Juvenile Idiopathic Arthritis (sJIA)
Author: Gail Molyneaux Facebook Page I have lived with Systemic Juvenile Idiopathic Arthritis (sJIA), also known as Still’s Disease, since the age of four. I’m now 55 years old. sJIA is a rare and debilitating form of Juvenile Idiopathic Arthritis (JIA). My journey with this condition has been marked by challenges and triumphs. Here is […]
RACC – UK receives Level 2 Disability Confident: Employer
Autoinflammatory Conditions and COVID 19 Vaccine Recipients
The survey will take approximately 6 minutes to complete. About:Under the General Data Protection Regulations (GDPR, 2018) and the Data Protection Act (1998), the information you share here is legally owned by you, not RACC – UK. There may be occasions where RACC – UK may have to access your information for Safeguarding purposes, in […]
PFAPA and Genetic Testing Questionnaire – UK ONLY
The survey will take approximately 5 minutes to complete. This questionnaire is designed to explore the use of genetic testing and to assess when a PFAPA diagnosis is given. We at Rare Autoinflammatory Conditions Community – UK (RACC-UK) have already seen a handful of children diagnosed with PFAPA who then have genetic testing, leading to […]
‘A Friend Named Effy’
Written by Adi Zelichov Illustrated by Tamar Moskowitz Medical consultation: Prof. Shai Padeh Language Counseling: Talia Hasson Translation: AQ Group https://www.periodicfevers.com/globalassets/periodicfevers/kidscorner/fmf_book.pdf