Navigation Links
TSC Global Awareness Day Scheduled for May 15
Date:5/2/2013

SILVER SPRING, Md., May 2, 2013 /PRNewswire-USNewswire/ -- On May 15, the Tuberous Sclerosis Alliance (TS Alliance) will join tuberous sclerosis complex (TSC) organizations around the world to observe the second annual TSC Global Awareness Day.  On this day, thousands of individuals and families affected by TSC will join together to increase public awareness of the rare disease and share their stories of hope for the future.

This year's TSC Global Awareness Day will also highlight the recent release of newly updated TSC clinical diagnosis, surveillance and maintenance guidelines. These guidelines, last updated in 1998, resulted from the 2012 TSC Clinical Consensus Conference, which brought together almost 100 of the world's top TSC experts.

"These updated criteria will significantly impact early diagnosis, leading to better treatment and an improved quality of life for anyone affected by TSC," said Kari Luther Rosbeck , President and CEO of the TS Alliance.

TSC is a genetic disorder that causes tumors to form in vital organs, primarily in the brain, eyes, heart, kidneys, skin and lungs.  It is also the leading genetic cause of both autism and epilepsy.  TSC is as common as Lou Gehrig 's disease or cystic fibrosis but is virtually unknown by the general population.

"One million people around the world are estimated to have TSC, with 50,000 or more right here in the United States," Rosbeck explained.  "Currently, there is no cure for TSC but ongoing research continues to be promising, not only for this disorder, but also for those suffering from autism, epilepsy and even cancer, because of TSC's relation to the same genetic pathway."

"At least two children born each day in the United States will have TSC," Rosbeck continued.  "However, many cases go undiagnosed due to obscurity of the disease, so events such as TSC Global Awareness Day are critically important to educate people about TSC as well as the importance of TSC research and how it relates to other more common diseases throughout the world."

TSC Global Awareness Day is sponsored internationally by Tuberous Sclerosis Complex International (TSCi), a worldwide consortium of TSC organizations of which the TS Alliance is a member.  Formed in 1974, the TS Alliance is dedicated to finding a cure for TSC, while improving the lives of those affected through the stimulation and sponsorship of research; development of programs, support services and resource information; and the development and implementation of public and professional education programs designed to heighten awareness of TSC.

For more information, visit www.tsalliance.org.

TS Alliance Media Contact:
Jaye Isham 
(301) 562-9890 
jisham@tsalliance.org

 


'/>"/>
SOURCE Tuberous Sclerosis Alliance
Copyright©2012 PR Newswire.
All rights reserved

Related medicine technology :

1. Algeta and Lumiphore Announce Further Expansion of Their Global Partnership for the Development of Targeted Alpha-pharmaceutical Cancer Therapeutics and Companion Diagnostics.
2. Hospira revela estrategia global para sus dispositivos
3. Hospira revela estratégia global para dispositivos
4. XBiotech to Present at UBS Global Healthcare Conference
5. GW Pharmaceuticals Announces Pricing of Initial Public Offering on the NASDAQ Global Market
6. Hospira Unveils Global Device Strategy
7. Deborah Autor, FDAs Deputy Commissioner for Global Regulatory Operations and Policy, to Join Mylan
8. DebMed Supports World Health Organizations Global "Save Lives: Clean Your Hands Day" on May 5
9. Pharmacy Automation Systems Market - Global Industry Analysis, Size, Share, Growth, Trends And Forecast, 2012 - 2018
10. Life Technologies Supports Global Effort to Help Accelerate Emergency Screening of Avian Influenza (H7N9) Virus
11. Lilly Celebrates National Volunteer Week with Deployment of Global Service Teams
Post Your Comments:
*Name:
*Comment:
*Email:
(Date:6/24/2016)... SAN CLEMENTE, Calif. , June 24, 2016 /PRNewswire/ ... pulmonary function testing company, is now able to perform sophisticated lung ... ndd Medical Technologies , Inc. Patients are ... labs.  Thanks to ndd,s EasyOne PRO ® , ARL patients like ... any needed testing done in the comfort of her own home. ...
(Date:6/24/2016)... Mass. , June 24, 2016   Pulmatrix, ... pharmaceutical company developing innovative inhaled drugs, announced today that ... Russell Investments reconstituted its comprehensive set of ... "This is an important milestone for Pulmatrix," ... will increase shareholder awareness of our progress in developing ...
(Date:6/23/2016)... June 23, 2016  MedSource announced today that ... e-clinical software solution of choice.  This latest decision ... value to their clients by offering a state-of-the-art ... relationship establishes nowEDC as the EDC platform of ... full-service clients.  "nowEDC has long been a preferred ...
Breaking Medicine Technology:
(Date:6/25/2016)... ... ... temporary closing of Bruton Memorial Library on June 21 due to a possible lice infestation, ... aspect of head lice: the parasite’s ability to live away from a human host, and ... necessary one in the event that lice have simply gotten out of control. , As ...
(Date:6/25/2016)... ... 25, 2016 , ... On Friday, June 10, Van Mitchell, Secretary of the ... to iHire in recognition of their exemplary accomplishments in worksite health promotion. , The ... Health & Wellness Symposium at the BWI Marriott in Linthicum Heights. iHire was one ...
(Date:6/24/2016)... CA (PRWEB) , ... June 24, 2016 , ... Marcy was in a crisis. Her ... would lash out at his family verbally and physically. , “When something upset him, he ... he would use it. He would throw rocks at my other children and say he ...
(Date:6/24/2016)... ... ... Topical BioMedics, Inc, makers of Topricin and MyPainAway Pain Relief Products, join The ‘Business for ... $12 an hour by 2020 and then adjusting it yearly to increase at the same ... wage, assure the wage floor does not erode again, and make future increases more predictable. ...
(Date:6/24/2016)... ... 2016 , ... Strategic Capital Partners, LLC (SCP) in concert ... capital for emerging technology companies. SCP has delivered investment events and professional ... than a million dollars of capital investment for five companies. The ...
Breaking Medicine News(10 mins):