WideTrial

WideTrial

WideTrial was built to launch Expanded Access Programs that allow more patients to explore the treatments that are in clinical trial. www.WIDETRIAL.org

easummit.net

Expanded Access 2.0

The second annual Expanded Access Summit, the leading industry conference on pre-market medical access, has announced free registration for up to 100 patients and caregivers. January 22-23, 2019 at the National Press Club of Washington DC. Discounted registration for non-proft organizations. https://easummit.net/

easummit.net The national forum on pre-market treatment access

linkedin.com

Psst... Pre-Approval Drug Access Has Nothing to do with "Right to Try".

Right to Try passed today in the Senate, but pre-approval access is about feasibility, not about new laws to strip away FDA involvement. We make these programs feasible, irrespective of the tinkering in Washington. https://www.linkedin.com/pulse/psst-pre-approval-drug-access-has-nothing-do-right-try-rabourn-cfa

linkedin.com "Right To Try" is political reality, but early-access to new medicine relies on the same commercial factors as before. Today the U.S. Senate passed

BREAKTHROUGH @ BIO2017

Proud to be part of BIO2017 and running the program sessions on Expanded Access and Real-World-Evidence generation. https://www.youtube.com/watch?v=3ILLNynyXFI

Join 16,000 global biotech leaders June 19-22 in San Diego Register Today for BIO 2017 http://convention.bio.org/attend/?utm_source=breakthrough-video&utm_me...

Save the Date: Sept. 15, 2017

WideTrial's 2017 Expanded Access Summit!

http://conta.cc/2no3L2O

myemail.constantcontact.com

Expanded Access To New Medicines: How it Works in the U.S.

Although we are low on funds, we at WideTrial have decided NOT to ask for donations at this year's end. Instead we'll strive for a well-informed public audience! Please view and share the new video on Expanded Access! Thank you! https://youtu.be/OQIC5opbIwo

The first of our series of educational videos on pre-approval access to therapeutics in serious, unsolved diseases.

Expanded Access To New Medicines: How it Works in the U.S.

Dear friends, though our funding is low, WideTrial has chosen NOT to ask for donations this year. Instead we'll settle for a well-informed public audience. Please share the new 10 minute video with your colleagues, friends, and anyone who needs to understand access to pre-approval medicines. https://youtu.be/OQIC5opbIwo

The first of our series of educational videos on pre-approval access to therapeutics in serious, unsolved diseases.

WideTrial

Expanded Access To New Medicines: How it Works in the U.S.

Dear friends, this is Jess, and I'm honored to share our 10 minute educational video on what Expanded Access is all about. It's the first of a series. This will be the preeminent educational channel on Expanded Access, and I promise you, it's not like all the other stuff you've seen. Enjoy!

https://www.youtube.com/watch?v=OQIC5opbIwo

The first of our series of educational videos on pre-approval access to therapeutics in serious, unsolved diseases.

globalgenes.org

RARECast: How to Improve Patient Access to Experimental Drugs

Bringing the newest medicines to patients in need.
https://globalgenes.org/raredaily/rarecast-how-to-improve-patient-access-to-experimental-drugs/

globalgenes.org Expanded access—a means by which physicians and patients can obtain experimental drugs outside of a clinical trial—has been an area of growing interest among rare disease patients. Jess Rabo…

myemail.constantcontact.com

Updates on Expanded Access

Newsletter Here! http://conta.cc/2afoXpF

myemail.constantcontact.com

WideTrial

[06/07/16]   Twitter @WIDETRIAL

Home - Wide Trial

ALS-ETF has changed its name to WideTrial. The new name is a better reflection of what we offer to drug companies and disease communities. We remain steadfast in our commitment to ALS, but as the leading organization devoted to Expanded Access, we are exploring new partnerships in additional therapeutic areas. Check out the new new site. http://widetrial.org/

widetrial.org WIDENING THE REACH OF DRUG DEVELOPMENT WideTrial™ is the leading source of regulatory and business knowledge relating to group-level Expanded Access programs in the U.S. WideTrial™ is the world’s first non-profit platform for sponsoring FDA-authorized Expanded Access programs. 3 ABOUT WideTria...

conta.cc

NP-001 and other 2015 Updates

NP-001 and other 2015 Updates http://conta.cc/1NSbMFl

conta.cc

myemail.constantcontact.com

Help Desperately Ill Patients Today

Our "Giving Tuesday" Newsletter is out!
http://conta.cc/1YFKmam

myemail.constantcontact.com

biocentury.com

FDA, industry, patient groups charting compassionate use policies - BioCentury.com

ALS Emergency Treatment Fund featured in this week's BioCentury.
http://www.biocentury.com/biotech-pharma-news/coverstory/2015-11-16/fda-industry-patient-groups-charting-compassionate-use-policies-a01

biocentury.com Compassionate use experiments are improving fairness and transparency but are not sufficient to ensure access or avert aggressive social media campaigns.

The New York Academy of Sciences

If you can't make the Expanded Access Symposium today, check it out via live stream, here: http://ow.ly/TWlvt

Agenda here: http://ow.ly/TWljP

ams.nyas.org To register for an event, make a donation, and/or manage your preferences, users must create an online profile. Create yours now.

conta.cc

Webinar Replay and NYU/NYAS Symposium

Webinar Replay and NYU/NYAS Symposium http://conta.cc/1NWIXdm

conta.cc

everylifefoundation.org

Community Congress Public Policy Working Group | EveryLife Foundation for Rare Diseases

Join us for a webinar on providing patients access to experimental therapies tomorrow, September 29th at 3:30pm EST. We will be joined by a panel of experts discussing potential frameworks for providing expanded access. More information here: http://ow.ly/SKTPx

everylifefoundation.org You are invited to join our upcoming webinar on Expanded Access, a discussion led by the Public Policy Working Group and part of the Community Congress initiative. The webinar will be held on Tuesday, September 29th at 3:30pm Eastern time. Moderator: Max Bronstein, Senior Director, Public & Governme…

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Expanded Access Webinar

Expanded Access Webinar http://conta.cc/1FY576u

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clinicaltrialsarena.com

Expanded Access in the United States; exploring its current and future role in clinical drug...

New article explains Expanded Access to new medicines. http://ow.ly/S9ZJ5

clinicaltrialsarena.com Jess Rabourn of Ax-S Pharma, LLC provides an overview on the principles and practices of Expanded Access programs

alsicebucketchallenge.org

ALS Ice Bucket Challenge

Ice Bucket Challenge 2.0 has officially begun! And this year, we're all in it together. Support ALS sufferers who struggle for treatment options by sharing this message and by selecting us on the attached page. http://alsicebucketchallenge.org/donate.html

alsicebucketchallenge.org Hosted by The ALS Association on behalf of all ALS organizations who are part of the Collaboration for a Cure.The ALS Association - 1275 K Street NW - Suite 250 - Washington, DC 20005All content and works posted on this website are owned and copyrighted by The ALS Association. ©2015

Our friend and science adviser, Dr. Robert Bowser, accepting the presitigious Sheila Essey Award for ALS Research today at American Academy of Neurology annual meeting in Washington DC.

www4.cmrreg.com

Registration and Hotel Booking for AAN Annual Meeting (2015)

www4.cmrreg.com Registration is open for the 67th AAN Annual Meeting, taking place in Washington, DC, USA from April 18-25, 2015. Register and book your hotel here.

practicalbioethics.blogspot.com

Practical Bioethics

Here's a background piece on Expanded Access written for the Kansas state legislature, by request from the Center for Practical Bioethics. http://practicalbioethics.blogspot.com/ Kansas politicians are considering a bill to rebuke FDA's oversight of early drug access, despite the fact there is no regulatory barrier to large-scale responsibly designed access programs.

practicalbioethics.blogspot.com The Center for Practical Bioethics is a nonprofit, free-standing and independent organization nationally recognized for its work in practical bioethics. Since 1984, the Center has helped patients and their families, healthcare professionals, policymakers and corporate leaders grapple with ethically…

raps.org

Can Drug Development be Accelerated? FDA Wants Help

New FDA guidance on using response-predictive markers to aid in drug development in heterogeneous diseases. Read it, because this is exactly what we are proposing! http://www.raps.org/Regulatory-Focus/News/2015/02/12/21326/Can-Drug-Development-be-Accelerated-FDA-Wants-Help/

raps.org The US Food and Drug Administration (FDA) is soliciting input on how it might accelerate the development of certain drug products through the use of new and emerging biomarkers.

twitter.com

Welcome to Twitter - Login or Sign up

Follow ALS Emergency Treatment Fund on Twitter! @ALSETF https://twitter.com/alsetf

twitter.com Connect with your friends — and other fascinating people. Get in-the-moment updates on the things that interest you. And watch events unfold, in real time, from every angle.

fda.gov

FDA Commissioner Margaret A. Hamburg Stepping Down

We're sorry to see Peggy Hamburg go. She was a true ally to patients and our work to provide treatment options. http://www.fda.gov/AboutFDA/CommissionersPage/ucm433094.htm

fda.gov FDA Commissioner Margaret A. Hamburg Stepping Down

2015sv.pmwcintl.com

PMWC 2015 Silicon Valley - Shifting Healthcare ( #PMWCintl )

Very pleased to take part in the Personalized Medicine World Conference 2015 in Silicon Valley this week. http://2015sv.pmwcintl.com/index.php

2015sv.pmwcintl.com The Personalized Medicine World Conference (PMWC) is the only fully integrated conference to examine the advances and challenges of Personalized Medicine through a practical lens. PMWC brings together the thought-leaders of business, government, healthcare-delivery, research and technology into one…

ebdgroup.com

Program Overview - Biotechnology Investor and Partnering Conference - Biotech Showcase 2015 -...

We had a very successful JP Morgan week this year. The largest gathering of health care investors and deal-makers in the world, every January in San Francisco. We participate in the Biotech Showcase. http://www.ebdgroup.com/bts/program/index.php

ebdgroup.com Program Overview - Biotechnology Investor and Partnering Conference - Biotech Showcase 2015 - San Francisco, CA, USA

alsconsortium.org

ALS Trials | ALS Clinical Research | The Northeast ALS Consortium (NEALS)

We had over 200 registered for yesterday's definitive Webinar on Expanded Access. If you missed it, check for he replay soon on the NEALS site. http://www.alsconsortium.org/

alsconsortium.org The Northeast ALS Consortium (NEALS) is committed to ALS Clinical Trial Research aimed at improving patient care and disease understanding of Amyotrophic Lateral Sclerosis (ALS).

alsetf.org

ALS Emergency Treatment Fund | Near-term treatment options for ALS

Year-end newsletter is out! Sign up on our home page if you haven't received it. http://alsetf.org/

alsetf.org We believe in serving the patients of today – dying ALS sufferers who don’t have the many years is takes to bring pipeline ALS drugs through clinical trial and to market. Large-scale Expanded Access programs allow physicians to explore more treatment options with their patients and can restore a leg…

campaign.r20.constantcontact.com

campaign.r20.constantcontact.com

New webinar date and time announced. Thursday, Jan. 8th at 2pm EST. http://ow.ly/G4ALY

campaign.r20.constantcontact.com **Please note that the ALS Association/NEALS PALS webinar on Expanded Access, originally scheduled for December 18th at 2pm ET has been RESCHEDULED To Thursday, January 8 at 2pm ET.

[12/17/14]   Alert: This week's webinar has been postponed to early January. Standby for details and sign-in link!

campaign.r20.constantcontact.com

NEALS Webinar: Expanded Access

Join us Thursday, Dec. 18th for an informational webinar on Expanded Access. This is a fact based review of the regulations, history, and best practices for large, single-arm, clinical programs for access to exploratory medicine. Details here: http://ow.ly/FoRPZ

campaign.r20.constantcontact.com Outside of traditional clinical trials, expanded access is the only legal channel for physicians and their patients to explore unapproved medicine. This webinar will explain the regulations and history of FDA-authorized expanded access and review some common misconceptions on the topic. The presen…

alsetf.org

ALS Emergency Treatment Fund | Holiday *Lights for Treatment* Kicks Off!

Who in your town has the best Christmas lights? Help us turn Holiday joy into hope for dying patients by asking big Christmas lights displayers to partner with us for donations! *Lou Gehrig's Lights for Treatment* Get involved here! http://alsetf.org/holiday-lights-for-treatment-kicks-off/

alsetf.org Holiday *Lights for Treatment* Kicks Off! 22:59 25 November in ALSETF News by Jess Rabourn 0 Comments This weekend we sent out over 500 letters to households across the country that have been publicized for their annual Christmas light displays. We asked them to join us in *Lou Gehrig’s Lights for T…

alsetf.org

ALS Emergency Treatment Fund | Holiday *Lights for Treatment* Kicks Off!

Who in your neighborhood has the best Christmas lights? Help turn holiday joy into hope for patients by asking big Christmas lights displayers to raise support for ALS-ETF. *Lou Gehrig's Lights for Treatment* Get involved here! http://alsetf.org/holiday-lights-for-treatment-kicks-off/

alsetf.org Holiday *Lights for Treatment* Kicks Off! 22:59 25 November in ALSETF News by Jess Rabourn 0 Comments This weekend we sent out over 500 letters to households across the country that have been publicized for their annual Christmas light displays. We asked them to join us in *Lou Gehrig’s Lights for T…

twitter.com

ALS-ETF (@ALSETF) | Twitter

Don't miss out on our daily commentary on Twitter! https://twitter.com/ALSETF

Join us there today!

twitter.com The latest Tweets from ALS-ETF (@ALSETF). ALS Emergency Treatment Fund is the world's first dedicated platform for Expanded Access treatment programs. Help us give patients a fighting chance!. Global

alsetf.org

ALS Emergency Treatment Fund | Research

Next-generation expanded access programs: helping sufferers of deadly diseases access exploratory medicine AND helping clinical research at the same time. Spread the word, and we will deliver it. http://alsetf.org/expanded-access-helps-not-hurts-clinical-research/

alsetf.org Although the first intent is providing treatment options, large-scale Expanded Access programs bring an extraordinary opportunity for ALS research. ALS-ETF’s programs will generate patient-outcomes data from large numbers of patients, across a broader spectrum of the disease than is included in cli…

snopes.com: Where Do ALS Ice Bucket Challenge Donations Go?

Let's watch ALSA, and make sure they allocate to programs like ours that actually raise the odds of current patients finding effective treatment against their disease.

"The ALS Association has been given a great deal of money and with that comes tremendous responsibility ... We are absolutely committed to transparency and will be communicating regularly with the ALS community, our donors, the media and the public about progress to invest these dollars wisely in areas that will have maximum impact on the fight against this devastating disease.
Read more at http://www.snopes.com/politics/business/als.asp#q1ThFPySeyCaXpmr.99"

snopes.com Does the ALS not use a huge portion of Ice Bucket Challenge donations for providing services to ALS sufferers?

sharks.nhl.com

Sharks Join in #ALSIceBucketChallenge

Thank you Sharks for including us along side the big-name! We're the ones working for treatment access! http://sharks.nhl.com/club/news.htm?id=728395&navid=DL|SJS|home >>>Everyone else, please ask your local sports franchises to support the ONLY name in ALS treatment access: ALS Emergency Treatment Fund.

sharks.nhl.com To help spread awareness and raise money for ALS research, Sharks players and staff took part in the #ALSIceBucketChallenge.

How to Really Help ALS Patients

For those who really want to help ALS Patients: http://tinyurl.com/puh2nlk

linkedin.com In the last three weeks, it’s likely more people have heard of ALS than at any other time since Lou Gehrig shared his diagnosis at Yankee Stadium in 1939. And it’s a good thing people hear about it.

Ice Buckets for Treamtent Access!

Convert Awareness into Action. Help the one organization that is in place to bring treatment access to current patients. ALS Emergency Treatment Fund. If you haven't spread the word about us yet, you're next on the challenge! https://www.youtube.com/watch?v=Vcev3ThxFOM

Convert Awareness into Action. Support the ALS Emergency Treatment Fund! We challenge all ALS supporters who haven't yet spread the word about our platform f...

alsetf.org

ALS Emergency Treatment Fund | Near-term treatment options for ALS

Thank you so much to everyone who has contributed to ALS Emergency Treatment Fund during this wave of ALS awareness! You'll be pleased to know that ours is the ONLY major organization focused on treatment options for current ALS patients. And we have no marketing department so we make the most impact out of every dollar contributed. Still 100% volunteer. http://alsetf.org/

alsetf.org We believe in serving the patients of today – dying ALS sufferers who don’t have the many years is takes to bring pipeline ALS drugs through clinical trial and to market. Large-scale Expanded Access programs allow physicians to explore more treatment options with their patients and can restore a leg…

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