,,ii #aadth ,,congress #b;d ,session ,s4 #cdca ,,in ,,the ,,senate ,,of ,,the ,,united ,,states ,september #bh1 #bjaf,mrs4 ,gillibrand 7for herself and ,mr4 ,schumer7 introduced the following bill2 which was read twice and referred to the ,committee on ,health1 ,education1 ,labor1 and ,pensions ,a ,,bill ,to coordinate and advance fibrosis research activities at the ,national ,institutes of ,health1 and for other purposes4 #a4 ,short title ,this ,act may be cited as the ,scleroderma and ,fibrosis ,research ,enhancement ,act of #bjaf4 #b4 ,findings ,congress finds as follows3 7#a7 ,scleroderma1 or systemic sclerosis1 is a chronic and potentially fatal rheumatic autoimmune disease of the connective tissue4 7#b7 ,about #ajj1jjj ,americans have systemic sclerosis1 which causes fibrosis 7very similar to scarring where excess connective tissue is created74 ,the symptoms of scleroderma vary greatly for each person1 and the effects of scleroderma can range from very mild to life-threatening4 ,the seriousness of scleroderma depends on the parts of the body that are affected and the extent to which they are affected4 7#c7 ,nearly #de percent of all deaths in the developed world are attributed to some type of chronic fibroproliferative disease4 ,as scleroderma impacts multiple organ systems1 systemic sclerosis can be considered as a prototypical disease for study1 and any insights into its causes are likely to be applicable more broadly to other forms of organ fibrosis and fibrotic illnesses 7such as pulmonary fibrosis and liver fibrosis74 7#d7 ,various institutes and centers of the ,national ,institutes of ,health currently support research into forms of fibrotic illness1 but there is little coordination and limited cross-cutting opportunity between these research portfolios4 ,much scientific progress will be gained by taking a broad1 collaborative1 and systematic approach to studying fibrosis4 #c4 ,national ,commission on ,scleroderma and ,fibrosis ,research 7a7 ,establishment ,not later than #a year after the date of enactment of this ,act1 the ,director of the ,national ,institute of ,arthritis and ,musculoskeletal and ,skin ,diseases1 acting jointly with the ,director of the ,national ,institutes of ,health1 shall establish a ,national ,commission on ,scleroderma and ,fibrosis ,research 7in this section referred to as the ,commission7 to develop the long-term plan under subsection 7b74 7b7 ,long-,term plan 7#a7 ,in general ,not later than #ah months after the date of establishment of the ,commission1 the ,commission shall develop and submit to ,congress a long-term plan on opportunities and challenges in scleroderma and fibrosis research4 7#b7 ,recommendations on research opportunities ,the plan under paragraph 7#a7 shall include recommendations on relevant research opportunities over the next decade1 including-- 7,a7 a comprehensive research plan which prioritizes fibrosis research opportunities that have cross-cutting value and require coordination across multiple institutes and centers of the ,national ,institutes of ,health2 7,b7 topic-specific research recommendations for each organ or system2 and 7,c7 an overview of common themes and specific steps for implementation of scleroderma and fibrosis research4 7c7 ,working groups ,the ,commission shall establish working groups-- 7#a7 to consider the various organs and systems impacted by fibrotic illness2 and 7#b7 to formulate the topic-specific research recommendations under subsection 7b77#b77;,b74 7d7 ,membership ,the ,commission shall be composed of-- 7#a7 the ,director of the ,national ,institute of ,arthritis and ,musculoskeletal and ,skin ,diseases 7or the ,director's representative72 7#b7 a representative of the ,office of the ,director of the ,national ,institutes of ,health who can provide input on program coordination across the institutes and centers of the ,national ,institutes of ,health2 7#c7 staff from institutes and centers of the ,national ,institutes of ,health1 as determined appropriate2 and 7#d7 non-,federal medical experts and patient advocates representing the various manifestations of scleroderma and fibrosis1 as determined necessary to form effective working groups under subsection 7c74 7e7 ,termination ,the ,commission shall terminate not later than #b years after the date of its establishment4 #d4 ,scleroderma and ,fibrosis ,working ,group 7a7 ,establishment ,not later than #ahj days after the development and dissemination of the long-term plan under section #c7;b71 the ,director of the ,national ,institute of ,arthritis and ,musculoskeletal and ,skins ,diseases shall create a working group1 to be known as the ,scleroderma and ,fibrosis ,working ,group 7in this section referred to as the ,working ,group74 7b7 ,responsibilities ,the ,working ,group shall-- 7#a7 oversee and assist with the implementation of the recommendations and research opportunities identified in the long-term plan under section #c7;b72 7#b7 coordinate with the ,office of the ,director of the ,national ,institutes of ,health and the various institutes and centers of the ,national ,institutes of ,health as appropriate to oversee and assist with such implementation2 and 7#c7 report1 as needed1 to the advisory council of the ,national ,institute of ,arthritis and ,musculoskeletal and ,skin ,diseases4 7c7 ,membership ,the ,working ,group shall be composed of-- 7#a7 representatives of the institutes and centers at the ,national ,institutes of ,health with active or planned research projects in scleroderma or fibrosis1 particularly staff who are serving or have served on the ,national ,commission on ,scleroderma and ,fibrosis ,research under section #c2 and 7#b7 patient advocates and extramural researchers who can provide meaningful input on the recommendations and research opportunities identified in the long-range plan under section #c7;b71 particularly individuals who are serving or have served on the ,national ,commission on ,scleroderma and ,fibrosis ,research under section #c4 7d7 ,meetings ,the ,director of the ,national ,institute of ,arthritis and ,musculoskeletal and ,skin ,diseases shall convene the ,working ,group for a meeting at least #c times each year4 #e4 ,report to ,congress ,not later than #b years after the date of establishment of the ,national ,commission on ,scleroderma and ,fibrosis ,research under section #c1 the ,director of the ,national ,institute of ,arthritis and ,musculoskeletal and ,skin ,diseases shall submit to ,congress a report on implementation of the long-range plan under section #c7;b74