Newsletter of the NIH Rare Diseases Clinical Research Network
Volume 3, Issue 1. January 2012

www.RareDiseasesNetwork.org

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In This Issue

Message from Alan Percy, MD – Newly re-elected Chair of the Rare Diseases Clinical Research Network

Spotlight on RDCRN Consortia: The Vasculitis Clinical Research Consortium

Arginine Therapy in Argininosuccinic Aciduria and its Effects on Liver Dysfunction –Evidence Based Analysis from a Randomized Clinical Trial

Lessons from the MILES Trial

National Center for Advancing Translational Sciences (NCATS) Established

Collaboration Between RDCRN & CTSA at The University of Kansas Medical Center

The Ride for Rare Diseases: A Model for Consortia Cooperation

STAIR PI Steiner Named Deputy Editor for Genetics in Medicine

RDCRN Opens Over 20 New Studies for Patient Accrual

About Spotlight

Past Issues

Editorial Board

 

Rare Diseases Headlines:

Office of Rare Diseases Research launches web site for Rare Diseases Human Biorepostiories and Biospecimens (RD-HUB)
>> More

Stewardship and Public Access to Research Data
>> More

RDCRN Conditions Approved for Social Security Compassionate Allowance
>> More

Featured Event:

Rare Diseases Day 2012
>> More

Spotlight Announcements / Calendar of Events

Lysosomal Disease Network: WORLD Symposium
San Diego, CA
Feb 8-10, 2012

Feedback

The staff of Spotlight are enthusiastic about the potential of our new publication to enhance communication among those interested in treatment and cure of rare diseases. We are very interested in your thoughts about how Spotlight can be improved. If you have suggestions for future issues, please let us hear from you. You can send your comments to RDNWebmaster@epi.usf.edu.

RDCRN Conditions Approved for Social Security Compassionate Allowance

On October 14, 2011, The Social Security Administration (SSA) approved 13 new rare diseases for Compassionate Allowance (CAL):

  1. Angelman Syndrome *
  2. Corticobasal Degeneration
  3. Lewy Body Dementia
  4. Lowe Syndrome*
  5. Malignant Multiple Sclerosis
  6. Multicentric Castleman Disease
  7. Multiple System Atrophy *
  8. Paraneoplastic Pemphigus
  9. Primary Central Nervous System Lymphoma
  10. Primary Effusion Lymphoma
  11. Progressive Supranuclear Palsy
  12. Pulmonary Kaposi Sarcoma
  13. The ALS/Parkinsonism Dementia Complex

* Disease studied by RDCRN Consortia.

According to the SSA website, Social Security has an obligation to provide benefits quickly to applicants whose medical conditions meet disability standards.

Compassionate Allowances (CAL) provide a way of quickly identifying diseases and other medical conditions that qualify under the Listing of Impairments based on minimal objective medical information. Compassionate Allowances allow Social Security to quickly target individuals for allowances based on objective medical information that can be obtained quickly about their condition.

The list of CAL conditions is developed through the efforts of a counsel of medical and scientific experts, researchers at the National Institutes of Health (NIH), public feedback during outreach hearings, and comments received from the Social Security and Disability Determination Service communities.

Commissioner Michael J. Astrue has held Compassionate Allowances public outreach hearings on rare diseases, cancers, traumatic brain injury (TBI) and stroke, early-onset Alzheimer's disease and related dementias, schizophrenia, cardiovascular disease and multiple organ transplants and autoimmune diseases.

These disorders  became an active part of SSA's Compassionate Allowance on December 10, 2011, at which point Social Security plans to begin accepting applications.

More information on Compassionate Allowances can be found at http://www.ssa.gov/compassionateallowances/