Saturday, October 30, 2010
Friday, October 22, 2010
Wednesday, October 20, 2010
Tuesday, October 19, 2010
Interview with Ron Bartek
this is an interview with Ron Bartek, president of FARA. Thanks to
Gian, from BabelFAmily for organising and posting this.
Gian, from BabelFAmily for organising and posting this.
hint... you might find it easier if you click on CC and use the
subtitles.
Friday, October 15, 2010
Epigenetic modifications and human disease
epigenetics is a very exciting field which aussie scientists are leading
the world in.... This one comes out of Spain
the world in.... This one comes out of Spain
http://www.nature.com/nbt/journal/v28/n10/abs/nbt.1685.html?lang=en
A message from President of FARA (US)
Dear friends,
Wanted you to have the news release below FARA is sending out about the
recently published U.S. Government report on rare disease research. I
am pleased to say that FARA was a key participant in the preparation of
the report and is enthusiastic about its recommendations, hoping they
will lead to accelerated progress toward treatments and a cure for FA
and other rare diseases.
Warm regards to you and your families,
Ron
Wanted you to have the news release below FARA is sending out about the
recently published U.S. Government report on rare disease research. I
am pleased to say that FARA was a key participant in the preparation of
the report and is enthusiastic about its recommendations, hoping they
will lead to accelerated progress toward treatments and a cure for FA
and other rare diseases.
Warm regards to you and your families,
Ron
Ronald J. Bartek
President
Friedreich's Ataxia Research Alliance (FARA)
P. O. Box 1537
Springfield, VA 22151
Tel (703) 426-1576
FARA website: http://www.CureFA.org
Email: fara@CureFA.org
Please register in the FARA Patient Registry at
http://www.curefa.org/registry/ and for e-news at
http://visitor.constantcontact.com/email.jsp?m=1101190303489
"FARA is Key Participant in Government Report on Accelerating Rare
Disease Research
Institute of Medicine Report Calls for Integrated National Strategy
On Monday, October 04, 2010, the Institute of Medicine (IOM) released
its report titled "Rare Diseases and Orphan Products: Accelerating
Research and Development." To help in accelerating rare diseases
research and product development, the National Institutes of Health
(NIH), with support from the Food and Drug Administration (FDA), asked
the IOM to examine the opportunities for and obstacles in developing
drugs and medical devices for treating rare diseases. The IOM appointed
a committee to prepare a report on these issues and called on a few rare
disease advocacy organizations, including FARA, to provide information
and perspective from their own experiences in grappling with these
opportunities and obstacles.
The IOM Report is rich in recommendations for action FARA has long
advocated. This is especially true in regards to the recommendations to
increase FDA and NIH resources and capabilities for supporting and
accelerating clinical and preclinical development of rare disease
therapies and for using FDA and NIH grants to foster public-private
partnerships bringing together in common cause government agencies,
pharmaceutical companies, academic scientists and rare disease advocacy
organizations such as FARA.
To guide policymakers in the Administration and Congress, the IOM Report
sets forth the elements of an integrated national strategy to promote
rare diseases research and product development. Among other
recommendations, the IOM calls for NIH to work with industry, academia,
and advocacy organizations to develop a comprehensive system of shared
resources for discovery research on rare diseases and to facilitate
communication and cooperation for such research. The IOM Report also
calls for the Secretary of the Department of Health and Human Services
to establish a national task force on accelerating rare diseases
research and product development. We all know that the effort and
investment needed to move further toward a collaborative, coordinated,
open, and sustained approach to rare diseases will be substantial, but
not making the investment will also be costly. FARA fully agrees with
the IOM in saying that the potential benefits justify a renewed
commitment to accelerating rare diseases research and product
development.
FARA's Executive Director, Jen Farmer, made the FARA presentation to the
IOM committee charged with preparing the Report – the Committee on
Accelerating Rare Diseases Research and Orphan Product Development. FARA
President Ron Bartek provided brief additional comments and served as a
consultant and reviewer of the Report. The IOM Report refers to
Friedreich's ataxia a number of times, cites Jen's presentation to the
Report Committee throughout the document and discusses FARA several
times in terms of a model advocacy organization. For example, FARA is
one of only six organizations used in Appendix F to illustrate
successful approaches to rare disease research and drug development.
FARA Spokesperson & Founder of Ride Ataxia, Kyle Bryant, is featured in
a photo on the cover of the report. In other portions of the Report,
FARA is credited with exemplary activities such as our successful
participation in the NIH program to accelerate advancement of
new drug discoveries into clinical trials (the NIH Rapid Access to
Intervention Development – RAID-- that helped move A0001from Edison
Pharmaceutical's lab into the current clinical trial), and our mouse
model program with The Jackson Laboratory.
You can go to www.iom.edu/rarediseaseresearch and read a summary of the
IOM report by clicking on "Report Brief" or see the entire report by
clicking on "Read Report Online for Free." Jen's presentation to the IOM
Committee, cited several times in the report, is at
http://iom.edu/~/media/Files/Activity%
20Files/Research/OrphanProductResearch/23-NOV-09/Farmer2.pdf.
About FARA
The Friedreich's Ataxia Research Alliance's (FARA) mission is to marshal
and focus the resources and relationships needed to cure FA by raising
funds for research, promoting public awareness, and aligning scientists,
patients, clinicians, government agencies, pharmaceutical companies and
other organizations dedicated to curing FA and related diseases.
www.CureFA.org
Contact
Jennifer Farmer
Executive Director, Friedreich's Ataxia Research Alliance
(484) 875 3015
info@curefa.org
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