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The HHS Syndication Storefront allows you to syndicate (import) content from many HHS websites directly into your own website or application. These services are provided by HHS free of charge.

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NCATS

How to Get Involved in Research

research  registry  clinical trials  clinical studies  disease registry  researchers  clinical specimens  Genetic Disorders  rare diseases  Rare disorders  Genetic Disease  biospecimen  biorepository 

Reports about clinical research study results are often in the news, but it can be difficult to find out about studies that are in progress. If you or a loved one has a rare condition, you may be interested in participating in a research study. This guide can help you find current research studies.

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NCATS

Support for Patients and Families

support  registry  clinical trials  disease registry  advocacy  support groups  Genetic Disorders  non-profit/community and advocacy organizations  rare diseases  Rare disorders  Genetic Disease  Patient Advocacy  family support 

Individuals and families affected by rare medical conditions might look to nonprofit support and advocacy groups for different reasons. Some may want to find other people who understand how having the condition affects their lives. Others are searching for medical information, treatment options, the latest research, or financial aid resources. This guide will help you learn more about the different types of information and services offered by nonprofit support and advocacy groups.

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CDC

Growing Cancer Registries in the Caribbean

cancer  caribbean  registry  Barbados 

CDC and its partners are developing a regional cancer registry hub in the Caribbean.

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CDC

CERCLA Priority List of Hazardous Substances

health effects  health  research  policy  public health  disease  agency  federal  effects  risk  program  toxic  response  data  adverse  activity  exposure  human  public  additional 

ATSDR's Substance-Specific Priority Data Needs (PDNs)

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CDC

Minimal Risk Levels for Hazardous Substances (MRLs)

health effects  health  disease  effects  risk  toxic  body  data  adverse  levels  acute  exposure  human  screening  public  environmental  renal  ATSDR  substances  oral 

An MRL is an estimate of the daily human exposure to a hazardous substance that is likely to be without appreciable risk of adverse noncancer health effects over a specified duration of exposure. These substance-specific estimates, which are intended to serve as screening levels, are used by ATSDR health assessors and other responders to identify contaminants and potential health effects that may be of concern at hazardous waste sites.

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NCI

Cancer Clusters

cancer  risk  CDC  environmental  registry  clusters  carcinogen  carcinogenesis  3.58 

A fact sheet that describes what constitutes a cancer cluster and the process for reporting and investigating suspected clusters.

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CDC

Closure of Varicella-Zoster Virus-Containing VaccinesPregnancy Registry - United States, 2013

states  closure  varicellazoster  viruscontaining  vaccinespregnancy  registry 

Mona Marin, MD1, English D. Willis, MD2, Ann Marko2, Sonja A. Rasmussen, MD3, Stephanie R.

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CDC

ALS Registry Turns 6 | CDC Features

anniversary  als  registry  amyotrophic lateral sclerosis  CDC Features  lou Gehrig  incidents / prevalence 

It’s been over one year since the incredible Amyotrophic Lateral Sclerosis (ALS) Ice Bucket Challenge. Not since Lou Gehrig made his famous “Luckiest Man on Earth” speech in 1939 has so much public attention been focused on ALS. The Ice Bucket Challenge returned this past August and will every year thereafter until a cure is found.

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