Global Respiratory Summit 2021

Summary

The 2021 Global Respiratory Summit was held virtually on Thursday, September 9th, 2021. One more year, we wanted to provide the platform for patient organizations to raise their voice for urgent issues, share best practices, and come together with respiratory advocacy organizations.

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Global Respiratory Summit Agenda

• 13:00h CEST: Introductory session with GAAPP President, Tonya Winders from
• 14:00 CEST: Breakout sessions for the three respiratory disease states: asthma, COPD, rare disease. These sessions will bring respiratory advocacy organizations together to share best practices and leverage the collective voices in each respiratory disease.

Plenary Session:

During the plenary session Tonya Winders, President of GAAPP, presented the organization, its growth in staff, member organizations, and capacity since 2020. We also presented our Global Partners (WAO, FIRS, GlobalSkin, WHO-GARD, GINA & GOLD) and future coalitions.

A brief update and summary were presented on:

• Burden & Prevalence of Respiratory Diseases
• COVID-19 update

GAAPP also presented the following projects and achievements that are relevant for all the organizations working in the respiratory field:

• Type II Patient Navigator
• SecureDerm-AD registry; COVID-19 registry; Asthma360 & COPD360 registries
• Precision Severe Asthma Program—Break Over-Reliance & International Respiratory Council
• Further Website Update & SEO
• World Awareness Days—Asthma, AD, COPD, Lung Day, Urticaria
• 10 Peer-review publications
• Scientific Meeting & GRS & LATAM Summit
• Define Your Asthma Campaign
• Respiratory Right Care Summit & Advocacy Toolkit
• ACT on COPD Campaign
• EoE Knowledge Exchange
• Urticaria Shared Decision Making Tool
• International Respiratory Coalition

Recent project launches were presented in detail:

• Patient Empowerment Guides for COPD PAtients
• Science Animated videos on Clinical Trials and Shared Decision Making

We had to honor to count with Testimonials and presentations from:

• Elina Ikävalko from Finland. Elina, 33 years old is a Stage 3 emphysema patient diagnosed with severe COPD.
• Dr. Sarah Rylance, Medial Officer at the NCD Management Unit of the WHO Headquarters, that presented WHO´s policy for Respiratory Diseases.

GAAPP presented a Look Ahead of 2022:

• Research Projects & Registries
• World Awareness Days 2022
• LSE SA Audit Publication & Policy Priorities Alignment
• Digital Health/Telehealth Advancement
• Disease State Resource Center—Asthma, COPD, COVID, TB, Rare Diseases, etc.
• KPI’s to achieve SP Objectives:
  • Financial Sustainability
  • Building Organizational Capacity
  • Awareness
  • Education
  • Advocacy (Health Policy)

We finalized the main session by presenting how can the Member Organizations can get involved with GAAPP´s initiatives and how we can help the organizational growth and support the efforts of each Member.

Advocacy Statements Extracted from the Working Groups:

COPD Group:

1. Awareness: We need to increase awareness about all risk factors, get to the young people, and make sure we engage in conversations about clean air.
2. Education for Health Care Professionals: We have to make sure that the HCP can access guides, materials, and information in a summarised and simplified manner. Make sure translations are always available.
3. Policy Changing: Those risk factors must be made aware to policymakers and make sure we always engage in a multi-stakeholder group for any initiative, campaign, or event.

Asthma Group:

1.  Awareness: Asthma is a chronic disease that cannot be outgrown. More than half of asthma patients are not well-controlled and there is no one-size-fits-all approach due to the heterogeneity of asthma. Use PULSAR as red flags to trigger asthma review.
2. Education for Health Care Professionals: Explain differences between OCS, ICS & anabolic steroids. Explain the cumulative burden of steroids including comorbidities and different routes of administration.
3. Policy Change: Access to the right treatment for the right patient at the right time with the fewest barriers. Ensure LMIC have access to essential medications.

Rare Diseases Group:

1. Awareness: Rare diseases are not rare. There are over 7000 rare diseases and the number of people affected globally is high. 
2. Education for Health Care Professionals: Public health is highly important for the economy and society, so Health Care Professionals should help patients to be granted access to the treatment they need.
3. Policy Change: More research is important in the field of Rare Diseases. The unmet needs of patients in different communities need to be identified and addressed.

Recording

If you couldn’t assist we invite you to watch the recording of the plenary session. 

Thanks to the generous support of