PAR Members

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Current Members


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Alpha-1 Foundation

PAR Representative:
Karen L. Erickson
Associate Director, Community Engagement
3300 Ponce de Leon Blvd.
Coral Gables, Florida 33134
Tel: (877) 228-7321, Ext. 214
Fax: (305) 567-1317
Email
Website

The Alpha-1 Foundation is a not-for-profit Florida corporation founded in 1995 by John Walsh, Sandy Lindsey and Susan Stanley, three individuals diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1). A majority of the Board of Directors is either diagnosed with Alpha-1 or has a family member diagnosed with Alpha-1.

The Foundation has developed a solid infrastructure to promote research and the development of new therapies for improving the quality of life for those diagnosed with Alpha-1. It has fostered collaborations with investigators throughout the United States and Europe, working closely with the National Institutes of Health (NIH), the Food and Drug Administration (FDA), individuals affected by Alpha-1, and the pharmaceutical industry to expedite the development of improved therapies.

The Foundation participates in industry and government liaison groups and develops strategic alliances with government, industry and other national and international health and research organizations.

 

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Allergy & Asthma Network

PAR Representative:
Tonya Winders, MBA
President & Chief Executive Officer 
8229 Boone Blvd., Suite 260
Vienna, VA 22182
Tel: (800) 878-4403
Fax: (703) 288-5271
Email
Website

Allergy & Asthma Network is the leading nonprofit patient education and advocacy organization for people with asthma, allergies and related conditions. Our patient-centered network unites individuals, families, healthcare professionals, industry and government decision makers to improve health and quality of life for Americans with asthma and allergies. We specialize in making accurate medical information relevant and understandable to all while promoting evidence-based standards of care.

 

ARDS
ARDS Foundation

PAR Representative:
Susan East
ARDS Foundation Board Member & Community Outreach Coordinator
3330 Dundee Rd. Suite C4
Northbrook, IL 60062
Tel: (312) 749-7047
Email
Website

ARDS Foundation is a nonprofit organization dedicated to supporting patients and families faced with the horrific diagnosis of Acute Respiratory Distress Syndrome (ARDS). We are dedicated to increasing awareness about this little known syndrome. We work diligently to offer educational materials to families and patients who find themselves faced with an ARDS diagnosis for themselves or a family member. We work passionately with clinicians to ensure that the patient and family perspective is properly addressed from the time a patient enters the ICU until the time they leave the hospital. Finally, we partner with those in industry who realize how important the ARDS Community is and that we are all in this fight against ARDS together.

 

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The Children's Interstitial Lung Disease Foundation

PAR Representative:
Greg Porta, Founder
9937 Montclair Drive
Mason, Ohio 45040
Tel:513-459-0127
Fax: 513-874-6804
Email
Website

The Children's Interstitial Lung Disease (chILD) Foundation was founded and established as a not-for-profit foundation in Cincinnati, Ohio on May 20, 2004 by five families whose children had been diagnosed under an umbrella lung disease listed only as Interstitial Lung Disease (ILD). In just two years and in collaboration with a working group of Doctors in what is now a chILD Clinical Research Cooperative, several different diagnoses have been established within chILD, to include, NEHI, ABCA3, Surfactant B & C deficiency, and PIG. chILD syndrome has be found to effect children from birth up to 2 years and now is under review in children from 2-18 years of age.

The Mission of The Children's Interstitial Lung Disease Foundation is to provided support, education and hope to families affected with a Children's interstitial lung disease and to advocate and raise funds for scientific research. Furthermore, to develop and provide tools and methods to the medical and education communities to help them understand, diagnose, refer, treat and eventually find a cure for chILD.

 

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Foundation for Sarcoidosis Research

PPAR Representative
Ginger Spitzer, Executive Director

1820 W. Webster Avenue, Ste 304
Chicago, IL 60614
Tel: (312) 341-0500
Email
Website

The Foundation for Sarcoidosis Research is the nation's leading nonprofit organization dedicated to finding a cure for this disease and to improving care for sarcoidosis patients. Since its establishment in 2000, FSR has funded numerous domestic and international research efforts and worked diligently to provide resources to thousands. To learn more about Sarcoidosis or the foundation click here.

 

Hermanski
The Hermansky-Pudlak Syndrome Network Inc.

PAR Representative
Donna Appell, RN

One South Road
Oyster Bay, NY
Tel: 516-922-4022
Email
Website

The Hermansky-Pudlak Syndrome Network Inc. is a not for profit support group for people and families dealing with Hermansky-Pudlak Syndrome (HPS) and related disorders such as Chediak Higashi Syndrome. 

Their mission is to gather and disseminate information, to promote awareness and research, and to provide support to their  members. This keeps HPS actively developing educational materials, pamphlets, slides, and articles to help both families and professionals understand the needs created by this syndrome.

 

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The LAM Foundation

PAR Representative:
Mary Harbaugh
50 Sierra Drive
Arden, NC 28704
Tel: (651) 484-4909
Fax: (651) 484-4909
Email
Website

The LAM Foundation urgently seeks safe and effective treatments, and ultimately a cure, for lymphangioleiomyomatosis (LAM) through advocacy and the funding of promising research. The LAM Foundation is dedicated to serving the scientific, medical and patient communities by offering information, resources and a worldwide network of hope and support.

 

lungtransplant
Lung Transplant Foundation

PAR Representative:
Jeffrey R. Goldstein, President
Lung Transplant Foundation
7690 SW 54th Ave
Miami, FL 33143
Tel: (305) 401-1001
Email
Website

The Lung Transplant Foundation (LTF) is a nonprofit organization whose mission is to promote and advance research in order to improve long-term outcomes among lung transplant recipients. The LTF was established in 2008 by a small group of lung transplant recipients from Duke University Medical Center.

 

Lungevity
LUNGevity Foundation

PAR Representative:
Andrea Ferris
President and Chairman of the Board LUNGevity Foundation
6917 Arlington Blvd; Suite 352
Bethesda, MD 20814
Tel: 240-454-3100
Email
Website

LUNGevity is changing outcomes for people with lung cancer through research, education, and support.

They are dedicated to funding scientific research because the link between research spending and improved survival is clear. Their strategic investment in both early detection and therapeutics will help people live better with lung cancer and dramatically improve on the current 18% five-year survival rate. LUNGevity initiatives position them as thought leaders in the lung cancer advocacy community, providing programs and driving change for those with lung cancer today and in the future. LUNGevity seeks to empower patients to be active decision makers in their treatment process through their extensive educational resources, online peer-to-peer support, and in-person survivorship programs.

 

NTM
Nontuberculous Mycobacteria Info and Research

PAR Representative:
Susan Wisliceny, Executive Director

1550 Madruga Ave, Suite 230
Coral Gables, FL 33146
Phone (305) 667-6461 x26
Fax  (305) 662-8035
Email
Website

NTM Info & Research (NTMir) is a national 501(c)(3) non-profit organization formed on behalf of patients with pulmonary nontuberculous mycobacterial (NTM) disease for the purpose of patient support, medical education and research. NTMir serves patients and physicians concerned with NTM.

 

Pulmonary Fibrosis Foundation
Pulmonary Fibrosis Foundation

PAR Representative:
Jennifer Mefford
Director, Strategic Partnerships

230 East Ohio Street, Suite 500
Chicago, IL  60611
Phone (312) 546-4105
Fax  (866) 587-9158
Email
Website

The Pulmonary Fibrosis Foundation mobilizes people and resources to provide access to high quality care and leads research for a cure so people with pulmonary fibrosis will live longer, healthier lives. We are proud to serve as the leading patient advocacy organization of pulmonary fibrosis and are committed to funding research to find effective therapies and, hopefully one day, a cure.

 

PCD
Primary Ciliary Dyskinesia Foundation

PAR Representative:
Michele Manion
Vice President, Executive Director, Founder
10137 Portland Ave South
Minneapolis, MN 55420
Tel: (612) 386-1261
Fax: (866) 371-7575
Email
Website

Founded in 2002 the Primary Ciliary Dyskinesia Foundation (PCD) mission is to provide the leadership and resources needed to support increased research, accelerated diagnosis, improved health and, ultimately, a cure for primary ciliary dyskinesia. The foundations goals are to, improve diagnosis, quality of life and prognosis through research, educate & support patient, scientific and medical communities and raise awareness about the realities of the disease. Primary Ciliary Dyskinesia Foundation upholds its mission through their three program areas of: Research to promote the understanding of disease pathophysiology and disease progression, Education providing up-to-date and accurate information on research, treatment alternatives and coping strategies and Advocacy and Support.

 

Project Sleep
Project Sleep

PAR Representative:
Julie Flygare
President & CEO
P.O. Box 70206
Los Angeles, CA 90070
Tel: (323) 577-8923
Email
Website

Project Sleep is a 501(c)(3) non-profit organization raising awareness about sleep health and sleep conditions. Believing in the value of sleep, Project Sleep aims to improve public health by educating individuals about the importance of sleep health and sleep disorders. Project Sleep educates and empowers individuals using events, campaigns and programs to bring people together and talk about sleep as a pillar of health.

 

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Scleroderma Foundation

PAR Representative:
Kerri Connolly, Director of Programs and Services
300 Rosewood Drive, Ste 105
Danvers, MA 01905
Tel: (978) 624-1242
Fax: (978) 463-5809
Email
Website

The Scleroderma Foundation is the national organization for people with scleroderma and their families and friends. It was formed January 1, 1998, by a merger between the West Coast-based United Scleroderma Foundation and the East Coast-based Scleroderma Federation. For more information please visit foundation's website

 

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Tuberous Sclerosis Alliance

PAR Representative:
Kari Luther Rosbeck
CEO and President

801 Roeder Rd, Suite 750
Silver Spring, MD 20910
Tel:  (301) 562-9890 x 210
Fax: (301) 562-9870
Toll Free: (800) 225-6872
Email
Website

The Tuberous Sclerosis Alliance was founded in 1974 by four mothers coming together to provide fellowship, generate awareness, pursue more knowledge and provide hope to those that shared the common bond of tuberous sclerosis complex. These goals are still driving the organization today. The Tuberous Sclerosis Alliance is dedicated to finding a cure for tuberous sclerosis complex (TSC) while improving the lives of those affected. The intertwining arcs represent an abstract of the double helix or the structure of DNA. The spiral also shows that the TS Alliance's commitment to family and patient support, education and research are interdependent. The lower arc signifies shelter and a place for people to congregate. It symbolizes the bridge from where we've been to where we want to go. Its structure reassures us that it will always be here, for as long as we need it. The upper arc shows arms reaching out to people, to knowledge and to progress.

 

Last Reviewed: June 2018