Ad to Appear in Politico on 21st Century Cures Act

July 7, 2015

The rare disease community alongside the Every Life Foundation cheers on government officials who are championing the act which could double the amount of treatments available for patients. This comes as the organization plans to run an ad in Politico (a respected DC political publication) today on 21st Century Cures.

The bill provides incentives for companies to repurpose or “rarepurpose” existing treatments for rare disease indications. The legislation was included in the draft 21st Century Cures discussion bill released by the Energy & Commerce Committee. This is a major positive development as Chairman Upton (R-MI) has expressed interest in having the legislation voted on by Memorial Day. – See more at:

Supporters include:

National MPS Society l With Purpose l National PKU Alliance l Taylor’s Tale l RASopathies Network USA l Kids v Cancer l Let Them Be Little X2 Inc l Info and Resources for Idiopathic Pulmonary Hemosiderosis (IPH-NET) l Noah’s Hope l Mary Payton’s Miracle Foundation l Hope4Bridget Foundation l Batten Disease Support & Research Association l Cure Sanfilippo Foundation l Beyond Batten Disease Foundation l Drew’s Hope Scientific Research Foundation l International Pemphigus and Pemphigoid Foundation (IPPF) l Cure AHC l Autoinflammatory Alliance l MLD Foundation l Fabry Support & Information Group l Children’s PKU Network l FMD Chat l National Tay-Sachs & Allied Diseases Association (NTSAD) l Little Miss Hannah Foundation l Rare Disease United Foundation l Global Genes l Fibromuscular Dysplasia Society of America (FMDSA) l Lymphatic Malformation Institute l Mastocytosis Society l EB Research Partnership l BRBN Alliance l Jonah’s Just Begun Foundation l Abigail Alliance for Better Access to Developmental Drugs l Hannah’s Hope Fund l GNE Myopathy International l The Ryan Foundation l Organic Acidemia Association l Cardio-Facio-Cutaneous International l l Gwendolyn Strong Foundation l POMC Island One boy an Ocean of friends l Gene Giraffe Project l International FOP Association l Aware of Angels l CureCADASIL l GT23 FOUNDATION l Desmoid Tumor Research Foundation (DTRF)

l The Association for Glycogen Storage Disease l Gene Spotlight Inc. l Amyloidosis Foundation l Hereditary Neuropathy Foundation l Relapsing Polychondritis l Klippel-Feil Syndrome Freedom l CureDuchenne l Prader-Willi Syndrome Association l EveryLife Foundation for Rare Diseases l Bert’s Big Adventure l Parent Project Muscular Dystrophy l Sarcoma Foundation of America l The Nicholas Conor Institute l Luck2Tuck Foundation l Team Sanfilippo Foundation l The Rally Foundation for Childhood Cancer Research l CARES Foundation, Inc. l Help Extinguish Hunter Syndrome l Sephardic Health Organization for Referral & Education l Hunter Syndrome Research Coalition l The Kortney Rose Foundation l Saving Case & Friends l Phelan-McDermid Syndrome Foundation l The Children’s Medical Research Foundation, Inc. l Cure SMA l Narcolepsy Network l Celiac Support Association l Caleb’s Crusade Against Childhood Cancer l International Waldenstrom’s Macroglobulinemia Foundation (IWMF) l PKD Foundation l EDSers United Foundation l Choroideremia Research Foundation, Inc. l Genetic Alliance
l The Life Raft Group l The Will Luthcke Foundation l Angioma Alliance l Smashing Walnuts Foundation l Castleman Disease Collaborative Network/Castleman’s Awareness & Research Effort l The GIST Cancer

Awareness Foundation l The Truth 365 l The Arms Wide Open Childhood Cancer Foundation l Sophia’s Fund l Journey4ACure l Princesses on a Mission, Inc. l Noah’s Light Foundation l Pediatric Cancer

Foundation l West Virginia Kids Cancer Crusaders, Inc. l Bear Necessities Cancer Foundation l A Kids’ Brain Tumor Cure l RARE Science, Inc. l ISMRD (the International Advocate for Glycoprotein

Storage Diseases) l Hermansky-Pudlak Syndrome Network Inc. l Run4Rare l A-T Children’s Project l The Global Foundation for Peroxisomal Disorders l The Adult Polyglucosan Body Disease Research Foundation (APBDRF) l Alexa Nawrocki Pediatric Cancer Foundation l

Beckwith-Wiedemann Children’s Foundation International l The Brooke Healey Foundation l Talia’s Legacy Children’s Cancer Foundation l The Rare Childhood Cancer Advocacy

Group l Alex’s Army Childhood Cancer Foundation l The Catherine Elizabeth Blair Memorial Foundation l Stillbrave Childhood Cancer Foundation l Cures Within Reach

l ALL4Trey l Team Sabrina l Sofia’s Hope, Inc. l ALL4Trey l Delainee’s Battle l Joey’s Wings Foundation l The Bozeman 3 l Team Ashley Bragg l Cole vs Cancer l Dominick One in a Million l Samuel Szabo Foundation l Wilms Tumor Survivor Group

l Aiden’s Army l Sofia’s Hope, Inc. l Mikey’s Way Foundation l Team Serena l Supporting Our Cancer Kids l The Champ’s Corner l Habitat for Hope l Ali’s Angels Foundation l Gold Rush Cure Foundation l Sickle Cell Warriors, Inc. l The Rare

Cancer Research Foundation l Carson Leslie Foundation l Amyloidosis Research Consortium l Pulmonary Fibrosis Advocates l The Coalition for Pulmonary Fibrosis l Mytonic Dystrophy Foundation l LMSarcoma Direct Research Foundation l BioPontis

Alliance for Rare Diseases l Foundation for Ichthyosis & Related Skin Types, Inc. l 5p- Society l The Santonio Holmes III & Long Foundation l National

Fragile X Foundation l National Organization for Rare Disorders (NORD) OsteoPETrosis Society l Curing Retinal Blindness Foundation l

MAGIC Foundation l Cure HHT l DEFY Foundation l Chase After a Cure l DC Outreach Inc. l Children’s Cardiomyopathy

Foundation l Bridge the Gap – SYNGAP Education and Research

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