She. The subcommittee will come to order and dmi recognize self for five minutes of o statements. Thank you to our witnesses for sitting here today. The legislation before us will step helping to support rare disease. She a rare disease that affects less than 200,000 patients in the united states. According to the National Institute of hea there are over 10000s as many as 30 million amens despite 10 of the u. S. Population with a rare disease 95 o diseases most patients can evenosed which can be along journey only discover these options. Airbase is challenging especially when it comes to measuring the safety and efficacy of drugs for patient populations he investment and rare diseaseky and unpredictable. Better supportpproval. Research Rare Diseases and the which they seek appr ensure medicare and medicaid will cover this. Priority after program a decade ago bolster existing the orphan drug act. The doctor reduces financial risk for invaders to obtain resources needed to conduct Rare D
Now two thousand tomans are produced in the country and it should save five Million Dollars in foreign currency and it will be in this year and we have 12 people creating jobs. With the consultations that we had with the email recently , it was decided that this area should be invested and the capacity increase should really be one thousand tomans. Be active in the oil , gas, petrochemical, chemical and military industries. It is used to remove the production of active carbon. It is unnatural. In addition to creating sustainable employment and added value, unnatural crude sales will be prevented. From the collection of books on the characters of manas published by surah mehr publications with the approach of introducing the role model of a hero for the young generation, the book on the role models of influential people of contemporary iran, hamid dayalmeh, written by Mohammad Jafar biglou , is a representative of the first term of the Islamic Council from the city of mashhad. Martyr da
[applause] thank you very much. Good morni. Morning. Im going to take a quick seat. Is that okay . Through trying to compete in the contest. [laughter] next year. First of all, thank you very much for joining us. Lets think the bill. [applause] and a longtime partner and colleague working at the u. S. Conference of mayors and now at the league as an ordained elder. Always cold and evangelist. S and a warm thanks forjohnson. I use the product this morning. But most importantly, i appreciated you taking the connection between the National Urban league that reaffirms the partnership and reaffirms the role played in Opening Doors to Corporate America a long time ago. Before it was and inclusion. And i will get to that a little later. A second, i want to welcome, ure affiliate leaders from across the country. Give a wave and a hand. [applause]c those in the audience and those who are watching, this is the heart and soul of ourâ– n work. Men and women, highly talented, highly committed on th
[inaudible conversations] [inaudible conversations] [inaudible conversations] [inaudible conversations] [inaudible conversations] lets continue our second panel, and we thank our panelists for being here and for sitting through the first panel. Before i introduce our panelists, let me to say a few words. I think sometimes it is important to take a 30,000foot look at the systems under which we live. And we dont do that often enough. We deal with crisis by crisis. In my view, we are living with the Healthcare System which is broken and which is dysfunctional. We spend twice as much per capita on health care than any other country on earth. 13,000 every year, which is unsustainable. And yet despite that, 85 million americans are uninsured or underinsured. We are seeing in many parts of this country, unbelievably, above and beyond covid a decline in our life expectancy. We have half a million americanv whoever your experience bankruptcy which is related to the medical debt that they have.
The fda and others discussed Digital Health care and patient empowerment at a symposium hosted by the National Health council in washington, d. C. If everyone can take their seat, that would be great. Thank you. We had to get pictures taken, didnt get a selfie but anyway, welcome, everyone. My name is kenny mendez the president and ceo of the foundation of america. Also the current nih seaboard chair and on behalf of the board, welcome to todays event. Its great to see everyone. And before i turn it over to randy i just want to make a quick pitch. I dont think youre going to find an organization like us in this area that brings together Patient Organizations and our mission is to amplify the patient voice and other stakeholders in the Health Ecosystem under one roof. So, theres a membership tableand registration you can ak about membership but really appreciate everyone here and hopefully todays event you will see is exactly what the nhc does, bringing together diverse stakeholders, am