Tag: RARE

Over 7,000 Rare Diseases

There are over 7,000 Rare Diseases.

While each of the 7,000 diseases may be rare, when you add them all up they affect 30 million Americans … 30 million Europeans … 350 million around the globe … 1 of every 10 people have a Rare Disease.

Most of the muscular dystrophies are rare … cystic fibrosis is rare … many cancers are rare .. and metachromatic leukodystrophy is very rare, affecting 1 in 40,000 births with 1 in 100 of the general public being a carrier.

February is Rare Disease month, culminating on February 29th – a Rare Day indeed – which is Rare Disease Day.
Stay tuned for month of Rare Disease facts, tidbits and things to know.

Tags 1 in 10, 1 in 100, 7000, RARE, rare disease day

Advocacy Awareness Education General Newborn Screening Policy Research

RARE Patient Advocacy Summit – 2012

Post author By Dean Suhr
Post date November 11, 2012
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I was pleased to be the organizer and host for the RARE Project | Global Genes RARE Patient Advocacy Summit on September 29th, 2012. The day-long event with 140 in attendance and over 120 viewing via a live webcast. Videos of the event are available below for viewing.

Tags nbs, newborn screening, policy, RARE, research, summit, videos

Awareness Education General Research

List of Rare Diseases

This list was prepared using data supplied by the NIH’s Office of Rare Disease Research in late 2011. Please note that your medical providers and insurance payors probably have their own lists of diseases they think are rare – this list is for quick reference only.

Quick Jump: A B C D E F G H I J K L M N O P Q R S T U V W X Y Z #

Rare Diseases and Disorders Starting With “A”

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Aagenaes syndrome
Aarskog syndrome
Aase Smith syndrome
ABCD syndrome
Abderhalden Kaufmann Lignac syndrome
Abdominal aortic aneurysm
Abdominal chemodectomas with cutaneous angiolipomas
Abdominal cystic lymphangioma

Tags disease, leukodystrophy, list, lysosomal, NIH, ORDR, RARE, rare diseases