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FasterCures Supports Inclusion of Rare Disease Research in the Small Business Innovation Research Program Reauthorization
Jul 07, 2009

The Honorable Nydia M. Velazquez                  The Honorable Sam Graves
Chair,                                                                       Ranking Member,
House Committee on Small Business            House Committee on Small Business
2361 Rayburn House Office Building               B-363 Rayburn House Office Building
U.S. House of Representatives                         U.S. House of Representatives
Washington DC 20515                                       Washington DC 20515

Dear Chairman Velazquez and Ranking Member Graves:

The undersigned organizations write to express their support for the inclusion of rare disease
research as an area of research that is deserving of “special consideration” in the Small
Business Innovation Research (SBIR) program reauthorization. We applaud your efforts to
develop a strong measure to reauthorize and enhance SBIR, making it responsive to research
opportunities in the 21st century.

Some important research and development efforts undertaken by small businesses and focused
on rare diseases have been supported by SBIR. Small research enterprises may be attracted to
research that focuses on rare diseases, but they experience difficulties in obtaining support for
their research and development programs. Economic difficulties coupled with the already
significant financial hurdle that many small biotechnology companies face in drug
development can put rare disease research at risk, however special attention from SBIR grants
can help to foster significant progress in the search for treatments for these conditions.

While increased attention on rare disease research from SBIR grants stands to most benefit
small biotechnology companies, the true benefit is to the patients that we represent. These
individuals depend on the research and development pipeline for new therapies to extend and
improve their lives, and we applaud your legislation that will create a favorable environment
for support of rare disease research.

Sincerely,

Alpha-1 Association
Alpha-1 Foundation
ALS Association
American Association for Respiratory Care
American Sleep Apnea Association
ARPKD/CHF Alliance
AVI Biopharma
Beyond Batten Disease Foundation
BVVL International
Caring Voice Coalition
Colorado COPD Connection
Congenital Adrenal Hyperplasia Research Education and Support (CARES) Foundation
Costello Syndrome Family Network
Cutaneous Lymphoma Foundation
Cystic Fibrosis Foundation
ECD Global Alliance
EFFORTS (Emphysema Foundation For Our Right To Survive)
FasterCures
Foundation for Prader-Willi Research
Friedreich’s Ataxia Research Alliance (FARA)
Gene Logic
Genetic Alliance
Hannah’s Hope for Giant Axonal Neuropathy, Inc.
Hemophilia Foundation of America
HHT Foundation International
Hide & Seek Foundation
HumanGeneticDisorders.com
Huntington’s Disease Society of America
International Myeloma Foundation
Lymphatic Research Foundation
MHE Research Foundation
MLD Foundation
Muscular Dystrophy Association
National Alopecia Areata Foundation
National Foundation for Ectodermal Dysplasias
National Health Council
National Niemann-Pick Disease Foundation, Inc.
National Organization Against Rare Cancers
National Organization for Rare Disorders
National PKU Alliance
National Tay-Sachs & Allied Diseases Association, Inc.
NBIA Disorders Association
Ocimum Biosciences
OpenHelix LLC
Pachyonychia Congenita Project
Pediatric Adolescent Gastroesophageal Reflux Association
Platelet Disorder Support Association
PTC Therapeutics, Inc.
Pull-thru Network, Inc.
PXE International
Sarcoma Foundation of America
Shire HGT
Shwachman Diamond Syndrome Foundation
Sudden Arrhythmia Death Syndromes (SADS)
Tesserae Genetics
The Project: The Children’s Rare Disease Network
TransDerm, Inc.
Trisomy 18 Foundation
Tuberous Sclerosis Alliance
UNIConnect LC

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