PAR Members

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Current Members


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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.

 

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Alliance of Sleep Apnea Partners

PAR Representative:
Kathy Page
President   
1523 Fox Trot Rd
Smithon, MO 65350
Tel: (660) 620 -2382
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 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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COPD Foundation

PAR Representative:
Sara Davenport Latham
Chief Operating Officer
1140 3rd Street, NE
Washington, DC 20002
Tel: (866) 731-2673
Email
Website

The COPD Foundation’s mission is to prevent and cure chronic obstructive pulmonary disease (COPD) and improve the lives of all people affected by COPD. The Foundation’s activities focus on achieving these results through research, education and advocacy programs. 

 

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Cystic Fibrosis Research, Inc.

PAR Representative:
Siri Vaeth
Executive Director
1731 Embarcadero Rd, Ste 210
Palo Alto, CA 94303
Tel: (650) 665- 7565
Fax: (650) 561-4074
Email
Website

Cystic Fibrosis Research, Inc. (CFR) 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.

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Foundation for Sarcoidosis Research


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

Founder
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
Board Member
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.

 

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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.

 

phaware
PHAware Global Association

PAR Representative:
Marie Mascia Rand
Managing Director & Co-Founder
1227 N. Avon Street
Burbank, CA 91505
Tel: (844) 742-9273
Email
Website

Creating Global Pulmonary Hypertension Awareness Through Engagement and Innovation to Forge a New Course to a Cure.

Our unique expertise is in digital marketing and creating and leveraging innovative technology to support the constituents we serve. Our expertise allows us to operate more definitively and cost effectively, ensuring that more of our funding goes directly to programming.  We have a unique vision of how state of the art tools drive global awareness and how mobile technology, big data and machine learning can be leveraged for the betterment of the global pulmonary hypertension community.

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Pneumonia Innovations Network

PAR Representative:
Leith Greenslade
Co-Chair

501 Kings Highway E #400
Fairfield, CT 06825
Phone (917) 969-6084
Email
Website

The Pneumonia Innovations Network is a global network of more than 1,000 individuals representing organizations with a commitment to accelerate the development and adoption of innovative tools and approaches with the greatest potential to reduce child deaths from pneumonia. The Network has a special focus on five critical areas of innovation: (1) diagnostics, (2) pulse oximeters/oxygen therapy, (3) child-friendly antibiotics, (4) nutrition, and (5) reduction of air pollution. PIN aims to achieve unprecedented levels of collaboration among patient advocates, innovators, universities, companies, foundations, UN agencies, governments and investors to improve the quality, affordability and availability of pneumonia prevention, diagnostic, and treatment innovations for children. This group is chaired by Leith Greenslade (JustActions) and Amy Ginsburg (Save the Children) and is managed by Ashley Johnson at Save the Children. It provides a platform for the sharing of information, the testing of new ideas, and the building of transformative partnerships.

 

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.

 

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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: December 2019