{"id":6655,"date":"2021-02-22T10:56:18","date_gmt":"2021-02-22T16:56:18","guid":{"rendered":"https:\/\/ibio.org\/?page_id=6655"},"modified":"2022-02-28T09:30:10","modified_gmt":"2022-02-28T15:30:10","slug":"rare-disease","status":"publish","type":"page","link":"https:\/\/ibio.org\/rare-disease\/","title":{"rendered":"Rare Disease"},"content":{"rendered":"

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Rare Diseases are diseases or conditions that affect fewer than 200,000 people. But their impact on public health is far-reaching. In total, rare diseases affect 30 million Americans<\/strong>.<\/span><\/p>\n

Treatment options for rare diseases are limited and represent a significant unmet need for patients. 95% of the identified 6,000 rare diseases <\/span>do not currently have an FDA-approved medicine. 85% to 90% of rare diseases are critical or life-threatening<\/strong> <\/span>and disproportionately impact children (50%).<\/p>\n

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Patient & Care Giver Challenges
<\/span><\/strong>Across rare diseases, individuals and families have unique challenges they must manage daily. The inherent nature and complexities of rare diseases may delay an accurate diagnosis by more than seven years. Even after diagnosis, rare diseases pose many challenges in their treatment as patients and caregivers often have to manage complicated care schedules and medication regimens. There are also logistical challenges related to accessing care from specialists who are geographically dispersed from the patients.\u00a0<\/span><\/p>\n

Challenges to Drug Development for Rare Diseases
<\/span><\/strong>94%<\/strong> of orphan drugs in clinical trials will fail.<\/strong><\/span>\u00a0<\/strong><\/span><\/p>\n

The development of orphan drugs is fraught with practical challenges. There may be disease-specific complexities, such as poor understanding of the natural history of the therapeutic indication due to little information about disease progression, geographical dispersion of a small number of patients, and the relative scarcity of published clinical trials to inform study execution.\u00a0<\/span><\/p>\n

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Companies Fighting Rare Diseases<\/span><\/strong>
<\/span>We have seen remarkable progress in the fight against rare diseases over the past decade, providing treatment options to patients for the first time.<\/span><\/p>\n

The iBIO member companies fighting rare diseases have the resources, expertise, and infrastructure to make a more meaningful impact for rare disease communities.\u00a0<\/span><\/p>\n

Here are some of the iBIO Members focused on rare diseases and their commitment to their patient communities.<\/span><\/p>\n

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Public Policies Play an Important Role in Fostering Future Orphan Drug Innovation
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<\/span><\/strong>Sustained R&D investment in rare disease drug development supported by the 1983 Orphan Drug Act (ODA), is now driving rapid growth in later-stage clinical activity.\u00a0<\/span><\/p>\n

Since Congress passed ODA in 1983 , more than 800 new orphan therapies<\/strong> have been approved by the FDA. But millions of patients with rare diseases are still waiting for new medicines.\u00a0<\/span><\/p>\n

In addition to the crucial incentives provided by the ODA, three policy areas are critical for supporting continued investment in biopharmaceutical discovery and development efforts, including orphan drugs:\u00a0<\/span><\/p>\n

<\/span><\/p>\n

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  1. Strong intellectual property protections<\/span><\/li>\n
  2. A well-functioning, science-based regulatory system<\/span><\/li>\n
  3. Coverage and payment policies that support and encourage medical innovation<\/span><\/li>\n<\/ol>\n

    [\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_4,1_4,1_4,1_4″ disabled_on=”off|off|off” _builder_version=”4.9.0″ _module_preset=”default” custom_margin=”-31px|auto||auto||” global_colors_info=”{}”][et_pb_column type=”1_4″ _builder_version=”4.9.0″ _module_preset=”default” background_color=”#f5304b” border_radii=”on|10px|10px|10px|10px” global_colors_info=”{}”][et_pb_text _builder_version=”4.9.0″ _module_preset=”default” text_text_color=”#FFFFFF” header_3_text_color=”#FFFFFF” header_3_font_size=”30px” background_color=”#f5304b” custom_margin=”41px||-5px|||” custom_padding=”48px||0px|||” global_colors_info=”{}”]<\/p>\n

    THERE ARE OVER<\/h3>\n

    [\/et_pb_text][et_pb_number_counter title=”RARE DISEASES” number=”7000″ percent_sign=”off” admin_label=”number of rare diseases” _builder_version=”4.9.0″ _module_preset=”default” title_text_color=”#FFFFFF” title_font_size=”30px” number_text_color=”#FFFFFF” background_color=”#f5304b” min_height=”236px” custom_margin=”|0px|1px|||” global_colors_info=”{}”][\/et_pb_number_counter][\/et_pb_column][et_pb_column type=”1_4″ _builder_version=”4.9.0″ _module_preset=”default” background_color=”#00a6a6″ border_radii=”on|10px|10px|10px|10px” global_colors_info=”{}”][et_pb_circle_counter title=”OF RARE DISEASES ARE GENETIC” number=”72″ bar_bg_color=”#FFFFFF” admin_label=”PERCENT GENETIC” _builder_version=”4.9.0″ _module_preset=”default” title_text_color=”#FFFFFF” title_font_size=”30px” number_text_color=”#FFFFFF” number_font_size=”72px” max_width=”200px” min_height=”386.5px” custom_margin=”0px|auto|4px|auto|false|false” custom_padding=”27px||7px|||” global_colors_info=”{}”][\/et_pb_circle_counter][\/et_pb_column][et_pb_column type=”1_4″ _builder_version=”4.9.0″ _module_preset=”default” background_color=”#ff5f33″ border_radii=”on|10px|10px|10px|10px” global_colors_info=”{}”][et_pb_text _builder_version=”4.9.0″ _module_preset=”default” text_text_color=”#FFFFFF” header_3_text_color=”#FFFFFF” header_3_font_size=”30px” background_enable_color=”off” custom_margin=”73px|||||” global_colors_info=”{}”]<\/p>\n

    AN ESTIMATED<\/h3>\n

    [\/et_pb_text][et_pb_number_counter title=”MILLION AMERICANS HAVE A RARE DISEASE ” number=”30″ percent_sign=”off” admin_label=”AMERICANS WITH RD” _builder_version=”4.9.0″ _module_preset=”default” title_text_color=”#FFFFFF” title_font_size=”30px” number_text_color=”#FFFFFF” background_color=”RGBA(0,0,0,0)” min_height=”279px” custom_margin=”-31px||1px|||” custom_padding=”||23px|||” global_colors_info=”{}”][\/et_pb_number_counter][\/et_pb_column][et_pb_column type=”1_4″ _builder_version=”4.9.0″ _module_preset=”default” background_color=”#1dcdc3″ border_radii=”on|10px|10px|10px|10px” global_colors_info=”{}”][et_pb_circle_counter title=”OF GENETIC RARE DISEASES START IN CHILDHOOD” number=”70″ bar_bg_color=”#FFFFFF” admin_label=”CHILDHOOD” _builder_version=”4.9.0″ _module_preset=”default” title_text_color=”#FFFFFF” title_font_size=”30px” number_text_color=”#FFFFFF” number_font_size=”72px” max_width=”201px” custom_margin=”0px|auto|-8px|auto|false|false” custom_padding=”19px||1px|||” global_colors_info=”{}”][\/et_pb_circle_counter][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=”4.9.0″ _module_preset=”default” min_height=”28px” custom_margin=”|auto|-54px|auto||” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.9.0″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.9.0″ _module_preset=”default” min_height=”45px” custom_margin=”-49px|||||” custom_padding=”0px|||||” global_colors_info=”{}”]<\/p>\n

    Source: PhRMA Rare Disease Chart Pack<\/a><\/span><\/h6>\n

    [\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ _builder_version=”4.9.0″ _module_preset=”default” background_color=”#00a6a6″ custom_padding=”||15px|||” global_colors_info=”{}”][et_pb_row column_structure=”3_4,1_4″ _builder_version=”4.9.0″ _module_preset=”default” custom_margin=”|auto|-26px|auto||” custom_padding=”11px|||||” global_colors_info=”{}”][et_pb_column type=”3_4″ _builder_version=”4.9.0″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.9.0″ _module_preset=”default” header_font_size=”47px” header_3_text_color=”#FFFFFF” header_3_font_size=”62px” width=”86.9%” min_height=”299px” custom_margin=”|-141px|-60px|||” custom_padding=”2px|2px||||” global_colors_info=”{}”]<\/p>\n

    MEET THE COMPANIES FIGHTING RARE DISEASES<\/h3>\n

    [\/et_pb_text][\/et_pb_column][et_pb_column type=”1_4″ _builder_version=”4.9.0″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ _builder_version=”3.24.1″ min_height=”3644.8px” custom_padding=”||28px|||” global_colors_info=”{}”][et_pb_row column_structure=”2_5,3_5″ _builder_version=”4.9.0″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”2_5″ _builder_version=”4.9.0″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/ibio.org\/wp-content\/uploads\/6B418B7D-DD21-44E1-A1C9-A43EBD0C92BB.jpeg” title_text=”6B418B7D-DD21-44E1-A1C9-A43EBD0C92BB” _builder_version=”4.9.0″ _module_preset=”default” min_height=”194px” custom_margin=”-43px|||||” global_colors_info=”{}”][\/et_pb_image][et_pb_text _builder_version=”4.9.0″ _module_preset=”default” custom_margin=”-51px||10px|||” global_colors_info=”{}”]<\/p>\n

    Horizon Therapeutics plc is a biotechnology company focused on researching, developing, and commercializing medicines that address critical needs for people impacted by rare and rheumatic diseases.<\/p>\n

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    COMMITMENT TO PATIENTS<\/span>\u00a0<\/span><\/h2>\n

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    Lundbeck, a global biopharmaceutical company based in Denmark with U.S. headquarters in Deerfield, Illinois, is tirelessly dedicated to restoring brain health, so every person can be their best.\u00a0 Lundbeck has a long heritage of innovation in neuroscience and is focused on delivering transformative treatments,\u00a0including therapies for brain diseases for which there are few, if any, treatment options, and niche diseases affecting subpopulations of people where there is a high, unmet medical need.<\/p>\n

    [\/et_pb_text][et_pb_image src=”https:\/\/ibio.org\/wp-content\/uploads\/employee-banner_edited_to-ibio-1.jpg” title_text=”employee banner_edited_to ibio (1)” admin_label=”Lundbeck photo” _builder_version=”4.9.0″ _module_preset=”default” custom_margin=”-10px|||||” custom_padding=”0px||0px|||” global_colors_info=”{}”][\/et_pb_image][et_pb_text _builder_version=”4.9.0″ _module_preset=”default” custom_margin=”-20px|||||” global_colors_info=”{}”]<\/p>\n

    Lundbeck considers itself an instigator of progress, understanding its commitment to rare diseases creates opportunity for other companies to enter the space. And that advances research and care for rare communities.<\/i><\/p>\n

    [\/et_pb_text][et_pb_button button_url=”https:\/\/lundbeck.com\/us” url_new_window=”on” button_text=”Learn More About Lundbeck” button_alignment=”center” admin_label=”Lundbeck Button” _builder_version=”4.9.0″ _module_preset=”default” custom_button=”on” button_text_color=”#c9260c” button_border_color=”#c9260c” global_colors_info=”{}”][\/et_pb_button][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.9.0″ _module_preset=”default” global_colors_info=”{}”][et_pb_post_slider include_categories=”447,current” show_meta=”off” _builder_version=”4.9.0″ _module_preset=”default” min_height=”264.7px” custom_margin=”164px||118px|||” custom_padding=”98px||131px|||” auto=”on” auto_speed=”3000″ border_radii=”on|10px|10px|10px|10px” global_colors_info=”{}”][\/et_pb_post_slider][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=”4.9.0″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.9.0″ _module_preset=”default” global_colors_info=”{}”][et_pb_divider color=”#00a6a6″ _builder_version=”4.9.0″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_divider][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_4,3_4″ _builder_version=”4.14.8″ _module_preset=”default” custom_padding=”|0px||||” global_colors_info=”{}”][et_pb_column type=”1_4″ _builder_version=”4.9.0″ _module_preset=”default” background_color=”RGBA(0,0,0,0)” background_enable_video_mp4=”off” global_colors_info=”{}”][et_pb_image src=”https:\/\/www.xerispharma.com\/Images\/xeris-logo-og.png” title_text=”Orphazyme_logo_transparent” align=”center” admin_label=”Xeris” _builder_version=”4.14.8″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_image][et_pb_text _builder_version=”4.14.8″ _module_preset=”default” custom_margin=”||12px|||” global_colors_info=”{}”]<\/p>\n

    Xeris\u2014a growing biotech with a focus on meeting the needs of patients grappling with rare diseases\u2014is again building Illinois as a dynamic biotech and rare disease hub. In the last year, the company has celebrated an FDA product approval and launch and has just completed its acquisition of Strongbridge Biopharma. With headquarters one block from Chicago\u2019s City Hall and a pharmaceutical development center in Fulton market, the company today markets 3 biopharma products and employs more than 300 people.<\/p>\n

    [\/et_pb_text][\/et_pb_column][et_pb_column type=”3_4″ _builder_version=”4.9.0″ _module_preset=”default” background_color=”RGBA(0,0,0,0)” use_background_color_gradient=”on” background_color_gradient_start=”rgba(0,0,0,0)” background_color_gradient_end=”rgba(0,0,0,0)” background_color_gradient_overlays_image=”on” background_image=”https:\/\/ibio.org\/wp-content\/uploads\/orphazymehighlight-01-1024×512.png” background_enable_video_mp4=”off” border_radii=”on|11px|11px|11px|11px” global_colors_info=”{}”][et_pb_text _builder_version=”4.14.8″ _module_preset=”default” text_text_color=”#FFFFFF” min_height=”123.8px” custom_margin=”80px||61px|||” custom_padding=”|24px||27px||” global_colors_info=”{}”]<\/p>\n

    Xeris\u2019 2 rare disease products are the just approved Recorlev (levoketoconazole) and Keveyis (dichlorphenamide).<\/strong><\/p>\n

      \n
    • Recorlev (levoketoconazole) received FDA approval in December and, as of January 31, 2022, is commercially available for the treatment of endogenous hypercortisolemia in adult patients with Cushing\u2019s syndrome for whom surgery is not an option or has not been curative.\u00a0<\/strong><\/li>\n
    • Keveyis (dichlorphenamide) is the first and only FDA-approved therapy for primary periodic paralysis. It is estimated that there are only about 5,000 patients in the US that have this ultra-rare neuromuscular condition.\u00a0<\/strong><\/li>\n<\/ul>\n

      Xeris is focused on meeting the needs of the rare disease community by ensuring access to treatment and providing comprehensive and customized white-glove services to patients and physicians throughout the entire rare disease treatment journey through Xeris CareConnection.<\/strong><\/p>\n

      [\/et_pb_text][et_pb_button button_url=”https:\/\/www.xerispharma.com\/” url_new_window=”on” button_text=”Learn More About Xeris” button_alignment=”center” admin_label=”Xeris Button” _builder_version=”4.14.8″ _module_preset=”default” custom_button=”on” button_text_color=”#FFFFFF” button_border_color=”#FFFFFF” custom_margin=”|-26px|33px|||” custom_padding=”||8px|||” global_colors_info=”{}”][\/et_pb_button][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=”4.9.0″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.9.0″ _module_preset=”default” global_colors_info=”{}”][et_pb_divider color=”#00a6a6″ _builder_version=”4.9.0″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_divider][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”2_5,3_5″ _builder_version=”4.9.0″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”2_5″ _builder_version=”4.9.0″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/ibio.org\/wp-content\/uploads\/ultragenyx2.jpg” title_text=”ultragenyx2″ admin_label=”ultragenyx” _builder_version=”4.9.0″ _module_preset=”default” custom_margin=”-52px||7px|||” custom_padding=”0px|||||” global_colors_info=”{}”][\/et_pb_image][et_pb_text _builder_version=”4.9.0″ _module_preset=”default” min_height=”89px” global_colors_info=”{}”]<\/p>\n

      Ultragenyx is a biopharmaceutical company involved in the R&D of novel products for treatment of rare and ultra-rare genetic diseases such as Angelman syndrome and X-linked hypophosphatemia.<\/p>\n

      [\/et_pb_text][et_pb_video src=”https:\/\/youtu.be\/hp2WTidZo54″ _builder_version=”4.9.0″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_video][et_pb_button button_url=”https:\/\/www.ultragenyx.com” url_new_window=”on” button_text=”Learn More About Ultragenyx” button_alignment=”center” admin_label=”Ultragenyx Button” _builder_version=”4.9.0″ _module_preset=”default” custom_button=”on” button_text_color=”#661066″ button_border_color=”#661066″ global_colors_info=”{}”][\/et_pb_button][\/et_pb_column][et_pb_column type=”3_5″ _builder_version=”4.9.0″ _module_preset=”default” global_colors_info=”{}”][et_pb_post_slider include_categories=”448″ show_arrows=”off” show_pagination=”off” show_meta=”off” _builder_version=”4.9.0″ _module_preset=”default” custom_margin=”||57px|||” custom_padding=”161px||148px|||” border_radii=”on|10px|10px|10px|10px” global_colors_info=”{}”][\/et_pb_post_slider][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_2,1_2″ disabled_on=”off|off|off” _builder_version=”4.14.8″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”1_2″ disabled_on=”off|off|off” _builder_version=”4.14.8″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/ibio.org\/wp-content\/uploads\/Jaguar-300×193.jpeg” title_text=”Jaguar” align=”center” admin_label=”Jagua” _builder_version=”4.14.8″ _module_preset=”default” global_colors_info=”{}” min_height=”181px”][\/et_pb_image][et_pb_text _builder_version=”4.14.8″ _module_preset=”default” min_height=”113.1px” custom_margin=”0px||41px|||” global_colors_info=”{}”]<\/p>\n

      Jaguar Gene Therapy\u2019s mission is to accelerate breakthroughs in gene therapy for patients suffering from severe genetic diseases. We built the company on a foundation of four elements that will allow us to deliver for patients \u2013 our team of experts, our initial pipeline, our confidence in the well-characterized AAV platform and our partnership with Deerfield Management.<\/p>\n

      [\/et_pb_text][et_pb_image src=”https:\/\/ibio.org\/wp-content\/uploads\/Screen-Shot-2022-02-28-at-9.24.41-AM.png” title_text=”Screen Shot 2022-02-28 at 9.24.41 AM” url=”https:\/\/jaguargenetherapy.com\/uncategorized\/jaguar-gene-therapy-announces-target-genes-for-initial-pipeline-programs-in-severe-genetic-diseases” url_new_window=”on” _builder_version=”4.14.8″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_image][et_pb_button button_url=”https:\/\/jaguargenetherapy.com\/” url_new_window=”on” button_text=”Learn More About Jaguar” button_alignment=”center” admin_label=”Jaguar Button” _builder_version=”4.14.8″ _module_preset=”default” custom_button=”on” button_text_color=”#0360a9″ button_border_color=”#0360a9″ custom_padding=”8px|||||” global_colors_info=”{}”][\/et_pb_button][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.9.0″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/ibio.org\/wp-content\/uploads\/novartis-logo-image.png” title_text=”novartis-logo-image” admin_label=”Novartis Logo” _builder_version=”4.9.0″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_image][et_pb_text _builder_version=”4.9.0″ _module_preset=”default” custom_margin=”59px|||||” global_colors_info=”{}”]<\/p>\n

      Novartis Gene Therapies is dedicated to developing and commercializing gene therapies for patients and families devastated by rare and life-threatening neurological genetic diseases.<\/p>\n

      We are headquartered in Bannockburn, IL with another location in Deerfield, IL.<\/p>\n

      [\/et_pb_text][et_pb_video src=”https:\/\/youtu.be\/ktmV7AP-OYw” _builder_version=”4.9.0″ _module_preset=”default” custom_margin=”-12px|||||” custom_padding=”||0px|||” global_colors_info=”{}”][\/et_pb_video][et_pb_button button_url=”https:\/\/www.novartis.com\/our-company\/novartis-pharmaceuticals\/novartis-gene-therapies” url_new_window=”on” button_text=”Learn More About Novartis” button_alignment=”center” admin_label=”Novartis Button” _builder_version=”4.9.0″ _module_preset=”default” custom_button=”on” button_text_color=”#0360a9″ button_border_color=”#0360a9″ global_colors_info=”{}”][\/et_pb_button][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ _builder_version=”4.9.0″ _module_preset=”default” background_color=”#00a6a6″ min_height=”485.7px” custom_margin=”-1px|||||” custom_padding=”41px||15px|||” global_colors_info=”{}”][et_pb_row column_structure=”3_5,2_5″ _builder_version=”4.9.0″ _module_preset=”default” custom_margin=”|auto|-26px|auto||” custom_padding=”11px|||||” global_colors_info=”{}”][et_pb_column type=”3_5″ _builder_version=”4.9.0″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.9.0″ _module_preset=”default” header_font_size=”47px” header_3_text_color=”#FFFFFF” header_3_font_size=”62px” width=”86.9%” min_height=”299px” custom_padding=”60px|||||” global_colors_info=”{}”]<\/p>\n

      ADDITIONAL INFORMATION AND RESOURCES ON RARE DISEASES<\/h3>\n

      [\/et_pb_text][\/et_pb_column][et_pb_column type=”2_5″ _builder_version=”4.9.0″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/ibio.org\/wp-content\/uploads\/NORD_Logo_wTagStacked_Web_RGB-e1601581253925-237×300.png” title_text=”NORD_Logo_wTagStacked_Web_RGB-e1601581253925″ url=”https:\/\/rarediseases.org” url_new_window=”on” align=”center” admin_label=”NORD” _builder_version=”4.9.0″ _module_preset=”default” max_height=”149px” custom_margin=”-25px|||||” custom_padding=”||0px|||” global_colors_info=”{}”][\/et_pb_image][et_pb_image src=”https:\/\/ibio.org\/wp-content\/uploads\/rdd-logo-transparent-300×288.png” title_text=”rdd-logo-transparent” url=”https:\/\/www.rarediseaseday.org” url_new_window=”on” align=”center” admin_label=”RDD” _builder_version=”4.9.0″ _module_preset=”default” max_height=”146px” custom_margin=”||-60px|||” custom_padding=”||0px|||” global_colors_info=”{}”][\/et_pb_image][et_pb_image src=”https:\/\/ibio.org\/wp-content\/uploads\/2019-08_DG_GG_CE-foundation-alliance-logo_V1.png” title_text=”2019-08_DG_GG_CE-foundation-alliance-logo_V1″ url=”https:\/\/globalgenes.org” url_new_window=”on” align=”center” admin_label=”RDD” _builder_version=”4.9.0″ _module_preset=”default” min_height=”81px” max_height=”113px” custom_padding=”92px||0px|||” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ admin_label=”Priorities” _builder_version=”4.9.0″ background_color=”#efefef” custom_padding=”||1vw|0px|false|false” z_index_tablet=”500″ box_shadow_horizontal_tablet=”0px” box_shadow_vertical_tablet=”0px” box_shadow_blur_tablet=”40px” box_shadow_spread_tablet=”0px” global_colors_info=”{}”][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"

      Rare Diseases are diseases or conditions that affect fewer than 200,000 people. But their impact on public health is far-reaching. In total, rare diseases affect 30 million Americans. Treatment options for rare diseases are limited and represent a significant unmet need for patients. 95% of the identified 6,000 rare diseases do not currently have an […]<\/p>\n","protected":false},"author":12,"featured_media":0,"parent":0,"menu_order":30,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"

      [vc_row][vc_column][vc_column_text]<\/p>

      Government & Public Affairs<\/h3>

      iBIO educates policymakers about the value the life sciences industry provides for patients and Illinois\u2019 economy. iBIO develops federal and state priorities based on member company engagement and develops strategies to educate and inform decision-makers as the voice of the industry broadly.<\/p>

      iBIO promotes thoughtful legislative and regulatory solutions that allow our member companies to research, develop, and commercialize breakthrough therapies and cures, and to ensure patients have affordable access to those new treatments. Likewise, iBIO opposes policies that threaten patient access, limit innovation, or adversely impact the Illinois life sciences industry\u2019s competitiveness in the global economy.[\/vc_column_text][vc_row_inner][vc_column_inner width=\"1\/2\"][vc_btn title=\"Contact Your Elected Official\" color=\"primary\" size=\"lg\" align=\"center\" link=\"url:http%3A%2F%2FGovernment%20%26%20Public%20Affairs||target:%20_blank|\" button_block=\"true\"][\/vc_column_inner][vc_column_inner width=\"1\/2\"][vc_btn title=\"Policy News\" color=\"primary\" size=\"lg\" align=\"center\" button_block=\"true\" link=\"url:https%3A%2F%2Fibio.org%2Fpolicy-news%2F|||\"][\/vc_column_inner][\/vc_row_inner][vc_tta_tabs style=\"modern\" color=\"sky\" active_section=\"1\"][vc_tta_section title=\"Legislative Priorities\" tab_id=\"1549381256643-61474a4a-fd79\"][vc_column_text]The Value of Innovation
      <\/strong>iBIO works closely with our national partners to educate and engage policymakers, payers, providers, patients and all other stakeholders in the ongoing conversation on the value of innovative medicines and therapies.\u00a0<\/span><\/p>

      Supporting Research
      <\/strong>National Institute of Health funding is critical to the Illinois life sciences community. Public investment in the NIH has helped establish the United States as a global leader in medical research and innovation. With over $800 million in 2017, Illinois is one of the top states receiving NIH funding, this funding is critical to our startup ecosystem. Since 2003 funding levels for the NIH have consistently remained flat and faced cuts as a result of sequestration. Taking into account the rising cost of conducting medical research, net NIH funding has actually decreased substantially. We support increased investment in NIH.\u00a0<\/span><\/p>

      Adequate FDA Funding<\/strong>
      By some estimates, the US Food and Drug Administration has regulatory domain over 25% of the US Gross Domestic Product.\u00a0 <\/span>Public faith in the FDA\u2019s oversight is critical to development of biological products in medicine, food and agriculture. The FDA needs to be funded at appropriate levels to exercise this oversight and to retain skilled scientists and administrators in the department. iBIO has in the past and will continue to advocate that the federal government support the FDA with a budget adequate to the agency\u2019s needs.<\/p>

      Intellectual Property & Patent Reform<\/strong>
      Intellectual property is the lifeblood of the life sciences industry. Strong patents, and an efficient, predictable, and objective patent system, are critical to ensuring a steady stream of capital to life sciences companies developing innovative medicines and other innovative therapies.<\/p>

      iBIO supports the STRONGER Patents Act of 2017 and will continue to advocate for passage of legislation to curb abusive patent practices, while strengthening the ability of patent owners to defend their inventions and businesses against infringement.<\/p>

      Freedom from Trade Barriers<\/strong>
      iBIO supports ensuring that export markets remain clear and unobstructed by unreasonable trade barriers.\u00a0 <\/span>This applies to products of biotechnology research, whether they are food products or biotech medical products.<\/p>

      Medicare<\/strong>
      iBIO supports protecting Part B and Part D benefits to ensure patients have access to the treatments they need. iBIO supports the continued \u201cnon-interference\u201d policy toward government oversight of Part D pricing and opposes government mandates that would reduce prices without demonstrated cost savings and positive health outcomes.<\/p>

      340B Drug Discount Program<\/p>

      The 340B Drug Discount Program is an important program designed to help uninsured indigent patients gain greater access to prescription medicines. However, exponential growth, significant rates of non-compliance revealed in audits, and a government report of lax oversight underscore the need to modernize this program to ensure it continues to serve patients in need. We support additional review and oversight to ensure the 340B program continues to operate as intended.<\/p>

      Drug Importation<\/strong>
      Consistent with the positions asserted by HHS Secretaries under both Democratic and\u00a0Republican administrations, iBIO strongly opposes importation of pharmaceuticals from foreign countries.<\/p>

      Medical Device Tax<\/strong>\u00a0<\/strong>
      <\/span>iBIO supports the permanent repeal of the 2.3% excise tax on medical devices that was included in the Affordable Care Act. This tax, levied against the revenues from the sale of devices, even in the cases of developing companies not yet profitable, has by various estimates cost the U.S. 30,000-40,000 jobs.<\/p>

      Opioid Epidemic<\/strong>
      iBIO is deeply committed to working collectively to prevent the misuse, abuse and diversion of prescription medicines. iBIO supports a balanced approach that ensures appropriate treatment of pain while also addressing this critical public health challenge.\u00a0<\/span><\/p>

      Drug Pricing & Transparency<\/strong>
      iBIO is committed to working with lawmakers, physicians, patients and other healthcare stakeholders to address the affordability of medicines. We believe that any legislative effort to address the affordability of medicines must be patient centered, holistic, and promote patient access to treatments and cures We oppose legislation that ignores the value of innovative therapies for individual patients and the importance of timely access to those treatments, interfere with the market-based ecosystem for the U.S. healthcare sector, and place undue burden on small, pre-commercial life sciences companies.\u00a0<\/span><\/p>

      Out of Pocket Expenses<\/strong>
      iBIO supports policies that ensure patients have access to the treatments they need, including the adoption of caps for out-of-pocket expenses and the continuation of co-pay assistance programs in Illinois.[\/vc_column_text][\/vc_tta_section][vc_tta_section title=\"State Priorities\" tab_id=\"1549381256669-1770862f-42d3\"][vc_column_text]Promoting an Innovation Based Ecosystem<\/strong>
      iBIO believes a strong and consistent commitment by our government partners is critical to maintaining an ecosystem for industry growth in Illinois. When government, industry, and academia work together, our community thrives. iBIO supports state-based policies that support the growth of the life sciences industry and expansion of the infrastructure needed for a robust startup community in Illinois. iBIO does not support, programs, regulations, and tax measures which are considered unusually burdensome by firms located and\/or doing business in Illinois.<\/p>

      R&D Tax Credit<\/strong>
      Illinois is one of the most active states for R&D in the nation, ranking eighth in overall R&D, academic R&D, and business R&D. However, despite the state\u2019s high volume of activity, the R&D landscape in Illinois has grown less quickly than in many of its peer states. Illinois has allowed the R&D Tax credit to sunset four times in the past 14 years, limiting the state\u2019s competitiveness compared with many of its peer states.\u00a0<\/span><\/p>

      iBIO supports the permanent extension of the R&D Tax Credit and updated to 50 percent of three-year average spend.<\/p>

      Increase Access to Capital<\/strong>
      Illinois must address the lack of funding for early stage life sciences companies to remain a competitive location for company growth and relocations. With federal funding dollars more difficult to attract, and venture capital investment looking for later-stage deals, seed capital is limited and highly competitive.\u00a0<\/span><\/p>

      iBIO supports the growth of current successful access to capital programs including the Angel Investment Tax Credit and the Illinois Growth and Innovation Fund. iBIO supports additional state incentive programs like SBIR\/STTR Matching.<\/p>

      Infrastructure<\/strong>
      For emerging life sciences startups in Illinois, the availability of quality laboratory space is one of the most crucial components for continued life sciences industry growth, innovation and development, and yet it is Illinois\u2019 scarcest resource. iBIO supports policy and investment to increase the availability of quality laboratory space.<\/p>

      Workforce Development<\/strong>
      For the life sciences industry, which stands as the most research and development intensive sector of our economy, the importance of talent is well recognized\u2014and the challenges are particularly acute. Industry, State Government and academia need to work in collaboration to identify skill training and education needs to support the growth of the community. iBIO supports programs and investment for Workforce Development in the Life Sciences Industry.\u00a0<\/span><\/p>

      Marketing Illinois<\/strong>\u00a0<\/strong>
      <\/span>Illinois historically has been successful in attracting the establishment of life sciences headquarters and relocations for foreign and domestic companies. iBIO supports investment and marketing programs to raise Illinois profile, including, attracting life sciences international trade conventions to Illinois like the Annual International BIO Convention.[\/vc_column_text][\/vc_tta_section][vc_tta_section title=\"Economic Blueprint\" tab_id=\"1553001794057-9b226b69-f0de\"][vc_column_text]IBIO\u2019s \u201cIllinois LIfe Sciences Economic Blue Print\u201d provides an economic overview of the life sciences community in Illinois, benchmarks Illinois growth with other high growth communities, identifies key areas of improvement for Illinois, and identifies proven best practices in community engagement and economic policy from other key life sciences states. Policy suggestions in the Blue Print focus on four key areas for Illinois: Access to Capital, Infrastructure, Workforce Development, and Marketing.[\/vc_column_text][\/vc_tta_section][\/vc_tta_tabs][vc_single_image image=\"2266\" alignment=\"center\" onclick=\"custom_link\" img_link_target=\"_blank\" link=\"https:\/\/ibio.org\/wp-content\/uploads\/2019\/03\/ibio-life-sciences-economic-blueprint.pdf\"][\/vc_column][\/vc_row]<\/p>","_et_gb_content_width":"","footnotes":""},"class_list":["post-6655","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/ibio.org\/wp-json\/wp\/v2\/pages\/6655","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/ibio.org\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/ibio.org\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/ibio.org\/wp-json\/wp\/v2\/users\/12"}],"replies":[{"embeddable":true,"href":"https:\/\/ibio.org\/wp-json\/wp\/v2\/comments?post=6655"}],"version-history":[{"count":4,"href":"https:\/\/ibio.org\/wp-json\/wp\/v2\/pages\/6655\/revisions"}],"predecessor-version":[{"id":8741,"href":"https:\/\/ibio.org\/wp-json\/wp\/v2\/pages\/6655\/revisions\/8741"}],"wp:attachment":[{"href":"https:\/\/ibio.org\/wp-json\/wp\/v2\/media?parent=6655"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}