How much do you know about Rare Diseases? C hecki to u tw i th o u rq u iz! 1 How many people are affected by a rare disease in the UK? Less than 500,000 About 1 million Above 3.5 million 2 For the majority of patients, how long does it take to receive a diagnosis of a rare disease? Less than 1 year 1 to 5 years 5 years over 20 years 3 Being a boy with A-symptomatic ALD means... That the boy has no symptoms and so he is well That the boy shows no symptoms but he has to be monitored for a certain period of time That the boy shows no symptoms but he has to be monitored constantly for the rest of his life 4 How long does it take for a healthy boy affected by ALD to become fully dependent? Few months At least 1 year From 1 to 5 years ALD Life operates to raise awareness of rare diseases and specifically ALD – Adrenoleukodystrophy (which affects children) and AMN – Adrenomyeloneuropathy (which affects adults). For these diseases at the moment there is no cure ! Please, support ALD Life to raise awareness about the condition of patients and families with these terrible diseases. If you want to donate, you can Text RARE29 £10 to 70070 Send a cheque to ALD Life, PO BOX 43642, London SE22 ORG A huge thank you for your time, wanting to learn more about rare disease, and thanks for your support of ALD Life from all our patients and our families! ALD Life www.aldlife.org
