Menu

Top Stories

Published on Thursday, April 11, 2019

Moderated discussion: “Advancing the innovation ecosystem: Working together for patients,” in Washington, DC

Moderated discussion: “Advancing the innovation ecosystem: Working together for patients,” in Washington, DC

On April 3, 2019, Francis Collins, MD, PhD, director of the National Institutes of Health (NIH), Mikael Dolsten, MD, PhD, chief scientific officer and president, Worldwide Research, Development and Medical, Pfizer, joined in a discussion led by Susan Dentzer, visiting fellow at the Robert J. Margolis Center for Health Policy, Duke University, in Washington DC.

Photo: Francis Collins, MD, PhD, director of the NIH (left) and author Alejandro Hernandez, editorial manager of the Alpha-1 Foundation (right)

For 60 minutes, Collins, Dolsten, and Dentzer engaged in a conversation with the theme of: “Advancing the innovation ecosystem: working together for patients,” where they emphasized the need for continued collaboration between the private and public sectors, along with the patient community, in order to advance new and emerging technologies and innovative approaches for potentially life-saving treatments and new outcomes in medicine.

“We are currently living in remarkable times with amazing things happening in areas such as cancer immuno-therapy, gene therapy, and gene editing. The things that are happening right now, I had no idea they would even be possible just five or six years ago,” expressed Collins when asked about the current position “the ecosystem,” as they described the collaboration between the private and public sectors with small biotech companies; an ecosystem with symbiotic characteristics where all contributors play an important role in a tremendous team effort, in medical research.

Collins and Dolsten agreed on the importance of advocacy groups and organizations as well as the patient community, in being part of the process for better outcomes and the ability to bring new and potential treatments for various conditions to the clinic, including rare diseases, such as Alpha-1 Antitrypsin Deficiency (Alpha-1). 

“We need you, the patient community, you are the reason we have gotten this far,” said Collins.

“One of the most important resources needed for this ecosystem to strive is you, the patient. We need to line-up our resources and keep the ecosystem going, including the patient community. There is no one better to bring together what others (physicians) can do than patients: you inspire all of us,” expressed Dolsten.

The Alpha-1 Foundation applauds and supports these types of initiatives, in which patients become partners and are of vital importance for therapeutic development. 

The panel also mentioned that it is critical to spread awareness and education in the medical community, and being able to have early diagnosis and detection, while mentioning the Accelerating Medicines Partnership (AMP), a public-private partnership between the NIH, the U.S. Food and Drug Administration (FDA), multiple biopharmaceutical, and life science companies, as well as non-profit organizations to transform the current model for developing new diagnostics and treatments by jointly identifying and validating promising biological targets for therapeutics.

The ultimate goal of AMP is to increase the number of new diagnostics and therapies for patients and reduce the time and cost of developing them.

“Patient participation is critical for AMP, especially to remind us what we are doing and why-and-who we are doing it for,” said Collins, who also mentioned the Foundation for the National Institutes of Health (FNIH) as being instrumental in bringing together funds and resources from both the private and public sectors, to work in mutual collaboration in research projects that will ultimately benefit the patient community.

The Alpha-1 Foundation applauds these types of initiatives that support research and bring innovative approaches to the table for the benefit of the patient community, as we are committed to finding a cure for Alpha-1 and improving the lives of Alphas, and those affected by the condition, worldwide.

For more information, please visit the Collaboration Ecosystem website and the AMP website.


Print

International Research Conference on Alpha-1 Antitrypsin & Alpha-1 Global Patient Congress kick-off

Wednesday, April 3, 2019
Alphas, physicians, and researchers are joining together in Dubrovnik, Croatia to begin the highly anticipated 4th International Research Conference on Alpha-1 Antitrypsin and 7th Alpha-1 Global Patient Congress. With a rich history of...
Divider

Alpha Jonathan Maidment goes back to the Pacific Crest Trail

Monday, April 1, 2019
Determined, driven, ready, and focused are some of the words that best describe Jonathan Maidment, 24, an Alpha from Connecticut who is passionate about hiking and helping the Alpha-1 community.  Jonathan is ready and looking forward to...
Divider

Board of Directors: New appointments to the Executive Committee

Tuesday, March 19, 2019
At their February 2019 meeting, the Alpha-1 Foundation Board of Directors appointed three members to new positions on the Executive Committee: Image: Elizabeth Johnson (left), Fred Walsh (center), Jennifer Jopp (right) Elizabeth Johnson was...
Divider

The Celtic Connection 2019: The pot of gold at the end of the rainbow

Sunday, March 17, 2019
The 2019 Celtic Connection, an annual Building Friends for a Cure event held in Boston, Massachusetts, joined 385 guests for a great night to raise awareness and over $138,000 for Alpha-1 Antitrypsin Deficiency (Alpha-1) research and related...
Divider

FDA to host public meeting on: “Patient Perspectives on the Impact of Rare Diseases,” in April

Wednesday, March 6, 2019
The U.S. Food and Drug Administration (FDA) announced a public meeting and an opportunity for public comment on “Patient Perspectives on the Impact of Rare Diseases: Bridging the Commonalities,” on April 29, 2019. This public...
Divider

The energy from Rare Disease Day continues

Tuesday, March 5, 2019
On February 28th, 2019, the Alpha-1 Foundation proudly wore its stripes to support the National Institutes of Health (NIH) sponsored Rare Disease Day (RDD) along with patient organizations, politicians, caregivers, medical professionals,...
Divider

Florida couple raising awareness for rare disease

Wednesday, February 27, 2019
Walking from his front door to the driveway’s end can leave Doug Peters gasping for air. Four years ago, he was diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1). “It was a tough reality when they explained to us why he has...
Divider

The Alpha-1 Foundation gears up for the 2019 Global meetings in Dubrovnik, Croatia

Tuesday, February 26, 2019
MIAMI, Feb. 26th, 2019 - The 7th Alpha-1 Global Patient Congress and 4th International Research Conference on Alpha-1 Antitrypsin will be held April 3-6, at the Sheraton Dubrovnik Riviera Hotel in Dubrovnik, Croatia. Patient leaders, physicians...
Divider

The Johnsons are ready to party for a cure… ‘80s style!

Friday, February 15, 2019
Richard and Sarah Johnson of St. Johns, Florida, have not stop believing in the mission of the Alpha-1 Foundation. Eleven years ago, when their son Lucas and daughter Grace were diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1) they made a...
Divider

Alpha-1 Foundation expresses gratitude to plasma donors

Wednesday, February 13, 2019
Recently, the New York Times published an article that, in the opinion of the Alpha-1 Foundation, portrayed an image of plasma donors that only focused on one side of the story.  Plasma donors can come from all backgrounds and levels of...
Divider

NORD continues to bridge the gap between patients and their health care

Thursday, February 7, 2019
Since its inception in the early 1980s, the National Organization for Rare Disorders (NORD) has been instrumental in providing assistance to individuals affected by rare diseases and their families; it was influential in the Orphan Drug Act of...
Divider

Alpha-1 Foundation welcomes new President and CEO

Monday, February 4, 2019
The Alpha-1 Foundation Board of Directors is excited to announce the appointment of Miriam O’Day as the new president and chief executive officer (CEO) of the Alpha-1 Foundation. “We thank Miriam for serving as interim CEO, since...
Divider
12345678910Last

Article Search

Enter keywords in text box and click Search button for results.

Archive