{"id":58877,"date":"2017-11-20T17:00:45","date_gmt":"2017-11-20T22:00:45","guid":{"rendered":"https:\/\/rarediseases.org\/statement-by-91-patient-organizations-in-opposition-to-the-house-of-representatives-repeal-of-the-orphan-drug-tax-credit\/"},"modified":"2017-11-20T17:00:45","modified_gmt":"2017-11-20T22:00:45","slug":"statement-by-91-patient-organizations-in-opposition-to-the-house-of-representatives-repeal-of-the-orphan-drug-tax-credit","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/statement-by-91-patient-organizations-in-opposition-to-the-house-of-representatives-repeal-of-the-orphan-drug-tax-credit\/","title":{"rendered":"Statement by 91 Patient Organizations in Opposition to the House of Representatives\u2019 Repeal of the Orphan Drug Tax Credit"},"content":{"rendered":"

Washington, D.C., November 20, 2017 \u2013<\/strong> \u201cLast week, the House of Representatives voted to repeal the Orphan Drug Tax Credit (ODTC) as part of the Tax Reform and Jobs Act<\/em> (H.R.1). Our organizations, which collectively represent millions of individuals with rare diseases, are disappointed and dismayed by this harmful repeal.<\/p>\n

The Orphan Drug Tax Credit has proven to be one of the most important incentives for developing innovative therapies for rare diseases or conditions. Without the Orphan Drug Tax Credit, 33 percent fewer therapies could be developed for our patients going forward<\/a>.<\/p>\n

Now that the House has voted to repeal the ODTC, it is more important than ever for the Senate to protect the 30 million Americans with a rare disease.<\/p>\n

Unlike the House bill, the Senate Finance Committee proposal does not repeal the Orphan Drug Tax Credit entirely. However, we remain concerned that it cuts the credit\u2019s value nearly in half by lowering its value from 50 percent of qualified clinical testing expenses to 27.5 percent.<\/p>\n

Our organizations support the Orphan Drug Tax Credit because it saves lives. We will not stand idly by as Congress deliberates on diminishing the hope of the 95 percent of individuals with a rare disease still waiting for their very first treatment. Any proposal that stands in their way to finally obtaining a safe and effective therapy is unacceptable.<\/p>\n

We implore Congress to join the thousands of patients, families, doctors, caregivers, and patient organizations across the country who are fighting for this credit. We cannot afford to move backwards.”<\/p>\n

Signers:<\/strong><\/p>\n

A Kids’ Brain Tumor Cure Foundation<\/p>\n

Adenoid Cystic Carcinoma Research Foundation<\/p>\n

Alpha-1 Foundation<\/p>\n

Alport Syndrome Foundation<\/p>\n

ALS Association<\/p>\n

American Cancer Society Cancer Action Network<\/p>\n

American Lung Association<\/p>\n

American Partnership for Eosinophilic Disorders<\/p>\n

American Porphyria Foundation<\/p>\n

Amyloidosis Research Consortium<\/p>\n

Angelman Biomarkers and Outcome Measures Alliance<\/p>\n

Aplastic Anemia and MDS International Foundation<\/p>\n

Association for Creatine Deficiencies<\/p>\n

Benign Essential Blepharospasm Research Foundation<\/p>\n

Bridge the Gap – SYNGAP Education and Research Foundation<\/p>\n

CCHS Network<\/p>\n

Chloe’s Fight Rare Disease Foundation<\/p>\n

CJD Aware!<\/p>\n

Consortium of Multiple Sclerosis Centers<\/p>\n

Congenital Adrenal hyperplasia Research, Education & Support Foundation, Inc.<\/p>\n

CureSMA<\/p>\n

Cyclic Vomiting Syndrome Association<\/p>\n

Cystinosis Research Network<\/p>\n

Dystonia Advocacy Network<\/p>\n

Dystonia Medical Research Foundation<\/p>\n

Epilepsy Foundation<\/p>\n

Everylife Foundation for Rare Diseases<\/p>\n

Fabry Support & Information Group<\/p>\n

Family Caregiver Alliance<\/p>\n

Fibrous Dysplasia Foundation<\/p>\n

FOD Family Support Group<\/p>\n

Foundation Fighting Blindness<\/p>\n

Foundation for Angelman Syndrome Therapeutics<\/p>\n

Foundation for Prader-Willi Research<\/p>\n

Foundation for Sarcoidosis Research<\/p>\n

Friedreich’s Ataxia Research Alliance<\/p>\n

GBS|CIDP Foundation International<\/p>\n

Hemophilia Federation of America<\/p>\n

Hermansky-Pudlak Syndrome Network Inc.<\/p>\n

Huntington\u2019s Disease Society of America<\/p>\n

Hydrocephalus Association<\/p>\n

Immune Deficiency Foundation (IDF)<\/p>\n

Indian Organization for Rare Diseases<\/p>\n

International Myeloma Foundation<\/p>\n

International Pemphigus & Pemphigoid Foundation<\/p>\n

International Waldenstrom’s Macroglobulinemia Foundation<\/p>\n

Jack McGovern Coats’ Disease Foundation<\/p>\n

Klippel-Trenaunay (K-T) Support Group<\/p>\n

Li-Fraumeni Syndrome Association (LFS Association \/ LFSA)<\/p>\n

The Life Raft Group<\/p>\n

Little Miss Hannah Foundation<\/p>\n

Lung Cancer Alliance<\/p>\n

The Marfan Foundation<\/p>\n

The Michael J. Fox Foundation<\/p>\n

Mila’s Miracle Foundation<\/p>\n

Moebius Syndrome Foundation<\/p>\n

The Myositis Association<\/p>\n

National Alopecia Areata Foundation<\/p>\n

National Brain Tumor Society<\/p>\n

National Health Council<\/p>\n

National Hemophilia Foundation<\/p>\n

National MPS Society<\/p>\n

National Organization for Albinism and Hypopigmentation<\/p>\n

National Organization for Rare Disorders (NORD)<\/p>\n

National PKU News<\/p>\n

NBIA Disorders Association<\/p>\n

NephCure Kidney International<\/p>\n

NGLY1.org<\/p>\n

Parent Project Muscular Dystrophy (PPMD)<\/p>\n

PCD Foundation<\/p>\n

Prader-Willi Syndrome Association (USA)<\/p>\n

Prevent Blindness<\/p>\n

PRISMS, Inc (Parents and Researchers Interested in Smith-Magenis Syndrome)<\/p>\n

PSC Partners Seeking a Cure<\/p>\n

Pulmonary Fibrosis Foundation<\/p>\n

Pulmonary Hypertension Association<\/p>\n

Quincy’s Quest Foundation<\/p>\n

RASopathies Network<\/p>\n

RYR-1 Foundation<\/p>\n

Sarcoma Foundation of America<\/p>\n

Scleroderma Foundation<\/p>\n

Sick Cells<\/p>\n

The Sitosterolemia Foundation<\/p>\n

The Snyder-Robinson Foundation<\/p>\n

SSADH Association<\/p>\n

Tuberous Sclerosis Alliance<\/p>\n

United Mitochondrial Disease Foundation<\/p>\n

US Hereditary Angioedema Association<\/p>\n

Vasculitis Foundation<\/p>\n

VHL Alliance<\/p>\n

The XLH Network, Inc.<\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

Washington, D.C., November 20, 2017 \u2013 \u201cLast week, the House of Representatives voted to repeal the Orphan Drug Tax Credit (ODTC) as part of the Tax Reform and Jobs Act … <\/p>\n

Continue reading “Statement by 91 Patient Organizations in Opposition to the House of Representatives\u2019 Repeal of the Orphan Drug Tax Credit”<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"footnotes":""},"categories":[232,190],"tags":[1416,347,263,1415,1411],"class_list":["post-58877","post","type-post","status-publish","format-standard","hentry","category-advocacy","category-featured-news","tag-coalition-statement","tag-orphan-drug-tax-credit","tag-orphan-drugs","tag-save-orphan-drugs","tag-senate-finance-committee"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58877","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=58877"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58877\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=58877"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=58877"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=58877"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}