A new Rare Diseases Action Plan for England will be published today (Tuesday 28 February) that will ensure those living with these conditions receive better care and treatment, fairer access to testing and have continued support.
Genetic disorders charity changes name and transfers services to new leadership
Genetic Disorders UK will now be known as Gene People, with its Jeans for Genes campaign placed under new leadership
by Jessica Brown
Free email bulletins
Overcoming diagnostic challenges in rare diseases through innovative digital health partnerships
17th March 2021
ADVERTISEMENT FEATURE
This piece is written and sponsored by Ipsen UK
At Ipsen, we are committed to supporting patients with rare diseases throughout their disease journey – from diagnosis through to treatment follow-up. By nature of being rare conditions, many are challenging to diagnose; often, GPs are expected to spot symptoms of conditions that many never see in their entire careers. Around a quarter of people affected across Europe are thought to wait between five and 30 years for a correct diagnosis
1, and symptoms are often mistaken for other, less serious issues. In neuroendocrine cancers, for example, symptoms can include fatigue or feeling bloated and over half of patients are thought to be advised by their GP to simply come back if symptoms persist. COVID-19 has further exacerbated referral challenges, with a DATA-CAN report noting a 70% drop of urg