Copd Foundation Inc

SEE SCHEDULE O.COPD'S MISSION IS TO SPEED INNOVATIONS WHICH WILL MAKE TREATMENT MORE EFFECTIVE AND AFFORDABLE, TO UNDERTAKE INITIATIVES THAT RESULT IN EXPANDED SERVICES FOR COPD PATIENTS, AND IMPROVE THE LIVES OF PATIENTS WITH COPD AND RELATED DISORDERS (THROUGH SCIENTIFIC RESEARCH, EDUCATION & AWARENESS) THAT WILL LEAD TO PREVENTION AND A STOP IN THE PROGRESSION OF COPD. THE ORGANIZATION'S ACTIVITIES FOCUS ON ACHIEVING THESE RESULTS THROUGH RESEARCH, EDUCATION AND ADVOCACY PROGRAMS THAT WILL LEAD TO PREVENTION AND SOMEDAY, A CURE FOR THE DISEASE.

RESEARCH & MEDICALTHE COPD360 UNIQUE RESEARCH AND THERAPEUTICS DEVELOPMENT PLATFORM INCLUDES MULTIPLE ELEMENTS SUCH AS TWO PATIENT REGISTRIES, COPD PATIENT POWERED RESEARCH NETWORK (COPD PPRN) AND THE BRONCHIECTASIS AND NTM RESEARCH REGISTRY (BRR), TWO INTERACTIVE MODERATED SOCIAL PLATFORMS ENGAGING OVER 60,000 INDIVIDUALS GLOBALLY, COPD360SOCIAL AND BRONCHANDNTM360SOCIAL, AND THE RECENTLY LAUNCHED DIGITAL AND THERAPEUTICS NETWORK, COPD360NET THAT SUPPORTS THE DEVELOPMENT AND ADOPTION OF NOVEL DIGITAL HEALTH TOOLS, MEDICAL DEVICES AND THERAPEUTICS THAT TREAT COPD, BRONCHIECTASIS, AND NONTUBERCULOUS MYCOBACTERIAL (NTM) LUNG DISEASE.IN ORDER TO ADVANCE THE DEVELOPMENT OF NEW MEDICINES, OR THE REPURPOSING OF EXISTING DRUGS, A NEW APPROACH IS NEEDED. IN ADDITION, COPD360NET IS FOCUSED ON IMPLEMENTATION SCIENCE FACILITATING DISCOVERY TO DELIVERY.COVID-19 RELATED RESEARCHAT THE ONSET OF THE COVID-19 PANDEMIC, WE FOCUSED ON LISTENING TO OUR COMMUNITY AND PROVIDING PEOPLE WITH ACCURATE, TIMELY, AND TRUSTED INFORMATION. WE LAUNCHED A SERIES OF GLOBAL SURVEYS TO CAPTURE THE EXPERIENCES OF HEALTH CARE PROVIDERS AND PEOPLE LIVING WITH COPD, BRONCHIECTASIS, ALPHA-1 ANTITRYPSIN DEFICIENCY, AND NTM LUNG INFECTIONS DURING THE COVID-19 PANDEMIC. AN IMPORTANT INSIGHT FROM THIS SURVEY SERIES WAS THE INCREASED IMPORTANCE AND RELIANCE ON TELEMEDICINE AND VIRTUAL PLATFORMS TO CONNECT WITH EACH OTHER, HEALTH CARE PROFESSIONALS, AND HEALTH AND WELLNESS PROGRAMS. BRONCHIECTASISANDNTM360 ADDRESSES THE UNMET NEEDS OF THE BRONCHIECTASIS AND NONTUBERCULOUS MYCOBACTERIA (NTM) COMMUNITIES. THE 360 FRAMEWORK OFFERS A GLOBAL ONLINE PLATFORM FOR COMMUNITY MEMBERS TO CONNECT AND INTERACT, EDUCATIONAL RESOURCES FOR PATIENTS, AND RESEARCH PROGRAMS MEANT TO ASSIST IN ACCELERATING THERAPEUTIC SOLUTIONS AND CURES FOR BOTH, BRONCHIECTASIS AND NTM. WE ARE FORTUNATE TO BE ABLE TO WORK COLLABORATIVELY AMONG ALL STAKEHOLDER GROUPS INCLUDING PATIENTS, CAREGIVERS, HEALTH CARE PROVIDERS, PHARMACEUTICAL COMPANIES, AND DEVICE MANUFACTURERS TO OFFER PROGRAMS CRITICAL TO OUR COMMON MISSION.

PUBLIC & PROFESSIONAL EDUCATIONTHE COPD FOUNDATION ENSURES THAT EVIDENCE-BASED, CURRENT EDUCATION CONTINUES TO BE AVAILABLE TO ALL STAKEHOLDERS, INCLUDING PATIENTS, CAREGIVERS, AND HEALTH CARE PROVIDERS. WHILE COVID-19 WAS A PRIMARY FOCUS OF OUR FY21 EDUCATION, OUR COMMUNITY ALSO EXPRESSED THE NEED TO ADDRESS OTHER CRITICALLY IMPORTANT ISSUES, SUCH AS COPING WITH A DIAGNOSIS AND STRESS, NUTRITION, EXERCISE, DEVICE TECHNIQUE, AND MANY MORE. TO THAT END, WE BOTH UPDATED OUR EXISTING LIBRARY AND DEVELOPED NEW PRINT, VIDEO, ONLINE, AND PODCAST EDUCATIONAL CONTENT. WE ALSO BEGAN TRANSLATING THESE TO SPANISH TO IMPROVE THE ACCESSIBILITY OF OUR CONTENT.

COMMUNITYTHE COPD360 COMMUNITY ENGAGEMENT COMMITTEE (COPD360CENCO), A DIVERSE PATIENTS AND CAREGIVERS COMMITTEE, WAS CREATED IN SEPTEMBER 2020 TO PROVIDE THE VOICE OF PATIENTS AND CAREGIVERS TO ALL OF THE COPD FOUNDATION'S EFFORTS, AND TO SUPPORT ITS INTERACTIONS WITH OTHER HEALTH CARE AND ADVOCACY ORGANIZATIONS. THE STRUCTURE FOR THE COPD360CENCO SUPPORTS THE DEVELOPMENT OF COPD360NET, WHILE ENHANCING THE COPD FOUNDATION'S REGULAR PRACTICE OF ENGAGING INDIVIDUALS WITH COPD, THEIR CAREGIVERS, AND FAMILIES.

POLICY & ADVOCACYTHE COPD FOUNDATION COMMUNITY WORKS WITH LOCAL, STATE, AND FEDERAL POLICY MAKERS TO INCREASE RESEARCH FUNDING, IMPROVE CARE DELIVERY, PROTECT ACCESS TO TREATMENTS, AND CREATE POLICY THAT IMPROVES THE LIVES OF THOSE WITH COPD, BRONCHIECTASIS AND NONTUBERCULOUS MYCOBACTERIAL (NTM) LUNG DISEASE. THE COPD FOUNDATION IS FOCUSING ITS 2021 ADVOCACY AND PUBLIC POLICY ACTIVITIES ON THREE MAIN AREAS:1. ACCESS TO SAFE, EFFECTIVE AND AFFORDABLE OXYGEN THERAPY2. ACCESS TO EFFECTIVE, AFFORDABLE PULMONARY REHABILITATION (IN PERSON OR VIA TELEHEALTH)3. IMPROVEMENT IN THE REGULATORY PROCESS OF QUALIFYING DRUG DEVELOPMENT TOOLS TO SUPPORT THE DEVELOPMENT OF NEW TREATMENTS FOR CHRONIC LUNG CONDITIONSIN FY21, WE FOCUSED OUR ADVOCACY STRATEGY ON THREE KEY AREAS: IMPROVED ACCESS TO AND REIMBURSEMENT OF PULMONARY REHABILITATION, SAFE AND EFFICIENT DELIVERY OF OXYGEN THERAPY, AND IMPROVED ACCEPTANCE OF NEW DRUG DEVELOPMENT TOOLS. OUR VIRTUAL IMPACT 2020 ADVOCACY EVENT DREW MORE THAN 50 ADVOCATES FROM AROUND THE UNITED STATES TO PARTICIPATE IN WORKSHOPS AND CALLS WITH THEIR ELECTED REPRESENTATIVES. PUBLICATIONSBOYCE, DANIELLE M ET AL. "NEW ADOPTERS OF TELEMEDICINE DURING THE CORONAVIRUS-19 PANDEMIC IN RESPONDENTS TO AN ONLINE COMMUNITY SURVEY: THE CASE FOR ACCESS TO REMOTE MANAGEMENT TOOLS FOR INDIVIDUALS WITH CHRONIC OBSTRUCTIVE PULMONARY DISEASE." CHRONIC OBSTRUCTIVE PULMONARY DISEASES (MIAMI, FLA.) VOL. 8,2 (2021): 213-218. DOI:10.15326/JCOPDF.2020.0181PRAVOSUD, VIRA ET AL. "SYMPTOM BURDEN AND MEDICATION USE AMONG PATIENTS WITH NONTUBERCULOUS MYCOBACTERIAL LUNG DISEASE." CHRONIC OBSTRUCTIVE PULMONARY DISEASES (MIAMI, FLA.) VOL. 8,2 (2021): 243-254. DOI:10.15326/JCOPDF.2020.0184PASQUALE, CARA B ET AL. "SELF-REPORTED COPD MEDICATION USE AND ADHERENCE IN THE COPD FOUNDATION PATIENT- POWERED REGISTRY NETWORK." CHRONIC OBSTRUCTIVE PULMONARY DISEASES (MIAMI, FLA.), 10.15326/JCOPDF.2021.0252. 8 SEP. 2021, DOI:10.15326/JCOPDF.2021.0252MCSHANE, PAMELA J ET AL. "GLOBAL ATTITUDES OF HEALTH CARE PROVIDERS ABOUT AEROSOLIZED AIRWAY CLEARANCE THERAPY IN BRONCHIECTASIS PATIENTS DURING THE CORONAVIRUS DISEASE 2019 PANDEMIC." CHRONIC OBSTRUCTIVE PULMONARY DISEASES (MIAMI, FLA.) VOL. 8,3 (2021): 319-325. DOI:10.15326/JCOPDF.2021.0214CHOATE, RADMILA ET AL. "THE BURDEN OF COUGH AND PHLEGM IN PEOPLE WITH COPD: A COPD PATIENT-POWERED RESEARCH NETWORK STUDY." CHRONIC OBSTRUCTIVE PULMONARY DISEASES (MIAMI, FLA.) VOL. 7,1 (2020): 49-59. DOI:10.15326/JCOPDF.7.1.2019.0146MCCREARY, GRETCHEN ET AL. "PATIENT-DRIVEN RESEARCH AGENDA: WHAT NEEDS TO BE STUDIED IN THOSE LIVING WITH COPD DURING THE CORONAVIRUS DISEASE 2019 PANDEMIC." CHRONIC OBSTRUCTIVE PULMONARY DISEASES (MIAMI, FLA.) VOL. 8,3 (2021): 314-318. DOI:10.15326/JCOPDF.2021.0203TAL-SINGER, RUTH ET AL. "THE COPD FOUNDATION CORONAVIRUS DISEASE 2019 INTERNATIONAL MEDICAL EXPERTS SURVEY: RESULTS." CHRONIC OBSTRUCTIVE PULMONARY DISEASES (MIAMI, FLA.) VOL. 7,3 (2020): 139-146. DOI:10.15326/JCOPDF.7.3.2020.0164