PAR Members

HomePatientsPublic Advisory RoundtablePAR Members ▶ Current Members
Current Members


image
Allergy & Asthma Network

PAR Representative:
Tonya Winders, MBA
President & Chief Executive Officer 
8229 Boone Blvd., Suite 260
Vienna, VA 22182
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.

 

 asap


Alliance of Sleep Apnea Partners

PAR Representative:
Kathy Page
President   
1523 Fox Trot Rd
Smithon, MO 65350
Email
Website

ASAP (Alliance of Sleep Apnea Partners) brings together patients, caregivers, researchers, and healthcare providers who work to improve the recognition, diagnosis and treatment of sleep apnea.  It is the mission of ASAP to educate patients and the public about sleep apnea and the potential risks if left untreated.  By providing a library of resources that includes educational materials, current research, supporting organizations, treatment options, sleep tools and products, ASAP can help enable patients to become advocates for their own healthcare.

 

 

ards
ARDS Alliance

PAR Representative:
Paula Blonski
Founder 
847 South Randall Rd, #138
Elgin, IL 60123
Email
Website

 

child
chILD Foundation

PAR Representative:
Heather Thompson
Vice Chair 
311 Elm Street
Ste C1#1045
Cincinnati OH 45202
Email
Website

The chILD Foundation is a 501(c)(3) non-profit organization whose mission is to provide compassionate support, education, and hope to children and families affected by these life-altering diseases as well as to accelerate research to find effective treatments and cures for all forms of Children’s Interstitial Lung Disease (chILD).

 

copd
COPD Foundation

PAR Representative:
Kristen Willard
Vice President, Public and Professional Education

1140 3rd St NE, 2nd floor
Washington, DC 20002
Email
Website

The COPD Foundation was established to improve the lives of people with COPD, bronchiectasis, and nontuberculous mycobacterial (NTM) lung disease through initiatives that expand services and speed innovations which will make treatment more effective and affordable. We do this through scientific research, education, advocacy, and awareness with the goal of disease prevention, slowed progression, and ultimately a cure.

 

 

cystic

Cystic Fibrosis Research Institute

PAR Representative:
Siri Vaeth
Executive Director
1731 Embarcadero Rd, Ste 210
Palo Alto, CA 94303
Email
Website

Cystic Fibrosis Research Institute (CFRI) was formed in 1975 by a group of parents whose children were not expected to survive their teen years. Our mission is to fund research, provide educational and personal support and spread awareness of cystic fibrosis (CF), a life-threatening genetic disease. Our vision is Inform, engage and empower the cystic fibrosis community to reach the highest possible quality of life, as we work towards a cure

CFRI has grown significantly over the past forty-plus years, and our programs are offered to the national and international cystic fibrosis community. We fund innovative CF research at medical centers and universities nationwide. CFRI’s education programs include our National CF Education Conference, podcast series, and online and printed educational materials. CFRI provides psychosocial support programs including counseling services, caregiver support groups, online mindfulness and wellness classes, and retreats for those impacted by CF. Our advocacy and awareness programs address access issues and policies and legislation that impact the CF community at the state and federal level. CFRI’s tagline is Research for Living ~ Partners for Life.

 

Hermanski
The Hermansky-Pudlak Syndrome Network Inc.

PAR Representative
Donna Appell, RN

Founder
One South Road
Oyster Bay, NY
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.

 

sarc
Foundation for Sarcoidosis Research

PAR Representative:
Mary McGowan
Chief Executive Officer

1820 W. Webster Ave, Suite 304
Chicago, IL 60614
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 fostered over $5 million in sarcoidosis-specific research efforts and has worked diligently to provide resources to thousands.

 

 

lam
The LAM Foundation

PAR Representative:
Susan Sherman
Chief Executive Officer
4520 Cooper Road, Suite 300
Cincinatti, OH 45242
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.

 

ltf
Lung Transplant Foundation

PAR Representative:
Amy Skiba
Executive Director
1249 Kildaire Farm Road, Suite 323
Cary, NC 27511
Email
Website

Creating a world where all lung transplant patients live long, healthy lives.

 

image
National Scleroderma Foundation

PAR Representative:
Angel Soto
Associate Director of Programs and Services
300 Rosewood Drive, Ste 105
Danvers, MA 01905
Email
Website

The National 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

 

pap
PAP Foundation

PAR Representative:
Steve Park
Second Vice President
3333 Burnet Avenue
CCRF R4029
Cincinnati OH 45229-3039
Website
Email

We provide hope to people suffering from pulmonary alveolar proteinosis (PAP) and the many others who will benefit from research to better understand and treat this devastating disorder.

Pulmonary Fibrosis Foundation
Pulmonary Fibrosis Foundation

PAR Representative:
Jennifer Mefford
Director, Strategic Partnerships

230 East Ohio Street, Suite 500
Chicago, IL  60611
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
10023 Morris Rd
Bloomington, MN, 55437
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.

 

image
TSC Alliance

PAR Representative:
Kari Luther Rosbeck
CEO and President

801 Roeder Rd, Suite 750
Silver Spring, MD 20910
Email
Website

The TSC 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 TSC Alliance is dedicated to finding a cure for tuberous sclerosis complex (TSC) while improving the lives of those affected. 

 

vasculitis
Vasculitis Foundation

PAR Representative:
Joyce A. Kullman
Executive Director
Vasculitis Foundation
PO Box 28660
Kansas City, MO 64188
Email
Website

Building upon the collective strength of the vasculitis community, the Foundation supports, inspires and empowers individuals with vasculitis and their families through a wide range of education, research, clinical, and awareness initiatives.