Examples to follow

  1. Increasing awareness, diagnosis and treatment of aspergillosis

    Plan:

    1. Summary
    2. UK-specific
    3. Global
    4. Useful examples to follow

 

Several major respiratory communities have already done exactly what you are aiming to do, and cystic fibrosis (CF) is one of the strongest success stories. But it’s not the only one. These examples are extremely helpful because they show:

  • how to raise awareness of a rare/under-recognised condition

  • how to use patients + professional societies

  • how to influence clinical pathways

  • how to shape public health and commissioning decisions

  • how to scale internationally

Below are the best examples for your strategy, starting with cystic fibrosis.

⭐ 1. Cystic Fibrosis (CF) – The gold-standard model

CF awareness and pathway improvement was successful because the community used:

A. A unified global message

CF Trust (UK), Cystic Fibrosis Foundation (CFF, USA), and CF Europe all aligned on:

  • early diagnosis

  • newborn screening

  • standards of care

  • specialist centre model

  • MDT-led treatment

  • equity across regions

This mirrors what you want for CPA/ABPA.

B. Highly effective patient-driven advocacy

Parents and patients formed a powerful advocacy bloc.

They created:

  • national campaigns

  • media stories

  • patient stories

  • CF Week

  • fundraising events

  • policy pressure on government

  • social media activism

  • lobbying for CFTR modulators (e.g., Kaftrio/Trikafta)

This community-led pressure:

  • transformed funding

  • dramatically improved treatment access

  • improved survival from teens → 50+

Exactly what chronic aspergillosis needs.

C. A specialist-centre care model

CF centres were fully recognised and funded.
This allowed:

  • MDT structure

  • national referral pathways

  • benchmarking

  • uniform standards

  • data collection

Chronic aspergillosis could follow a parallel model through NAC + satellite clinics.

D. Partnership with professional societies

CF groups collaborate directly with:

  • ERS

  • ATS

  • national respiratory societies

  • physiotherapy bodies

  • nursing groups

This gave them professional legitimacy — you can do the same via ELF + ERS.

E. International scale

CF Europe links 48 national CF organisations.
Their Awareness Week reaches millions.

This is exactly the model you could adapt for global aspergillosis awareness across patient groups in many countries.

⭐ 2. Bronchiectasis – An impressive example with ERS + ELF

The EMBARC/ERS Bronchiectasis network is a very close analogue for CPA/Aspergillus bronchitis.

Key success factors

  • Created a European registry

  • Standardised guidelines

  • ELF-led patient advisory group

  • Educational webinars

  • International awareness days

  • Strong partnership between patients and clinicians

Outcome:
Bronchiectasis went from being “the neglected lung disease” to a mainstream recognised condition with guidelines, pathways, and research investment.

This is a powerful model for chronic aspergillosis.

⭐ 3. NTM lung disease – another relevant success

Patients + physicians collaborated through:

  • NTM Patient Care UK

  • NTM Info & Research (USA)

  • ERS groups

  • Registry data

  • Clear referral pathways (e.g., Brompton NTM service)

Key outcomes:

  • Clinicians now actively think NTM in bronchiectasis workup

  • Increased access to specialist care

  • Clinical research, trials, guidelines

  • Awareness among GPs and respiratory grew steadily

This is nearly identical to chronic aspergillosis awareness needs.

⭐ 4. Sarcoidosis patient groups – reframing a complex disease

Global groups like WASOG + patient-led organisations created:

  • educational materials

  • clinician-facing campaigns

  • awareness days

  • ERS involvement

  • clinical trials networks

Relevance:
They turned a multi-system, poorly detected disease into a recognised chronic condition — an even closer structural parallel to CPA/ABPA.

⭐ 5. Pulmonary hypertension (PH) – a major advocacy win

PH used:

  • centralised specialist centres

  • patient-led campaigns

  • global awareness month

  • strong branding

  • ERS involvement

This led to:

  • earlier diagnosis

  • streamlined referral pathways

  • ring-fenced funding

  • clinician recognition of red flags

PH groups did what aspergillosis needs:
“Transform a rare, deadly disease into a well-recognised specialist condition with clear pathways.”

⭐ 6. Tuberculosis (TB) → Post-TB Lung Disease (PTLD)

The global TB community has recently launched:

  • PTLD guidelines

  • PTLD awareness campaigns

  • Integration into WHO policies

  • Inclusion in respiratory society programmes

  • TB survivors as advocates

  • Education for respiratory and ID physicians

This is directly linked to CPA (post-TB CPA).

⭐ 7. ABPA Parallel – Severe Asthma Patient Groups

Groups like:

  • Asthma + Lung UK

  • GINA

  • ERS Asthma Group

  • Global severe asthma networks

have created:

  • biologics education

  • patient stories

  • clinician toolkits

  • ABPA-specific guidelines

These campaigns normalised the idea of phenotyping, IgE measurement, and fungal sensitisation testing.

🎯 What these examples show (pattern across all successful conditions)

Successful awareness networks all have:

1. A unified umbrella organisation or alliance

(CF Trust / EMBARC / NTM Networks / PH associations)

2. Strong partnership with professional societies

(e.g., ERS, ATS, national respiratory societies)

3. Central specialist centres recognised as “hubs”

(NAC fits this perfectly).

4. A powerful patient advocacy group

This is exactly what you’re building.

5. Data (registry, audits, maps, outcomes)

You already have:

  • UK regional variation

  • patient numbers

  • detection gap

  • CPA estimates

This is gold.

6. Consistent visual identity + message

CF did this extremely well.
Bronchiectasis also: EMBARC blue branding is instantly recognisable.

7. Annual awareness days/weeks

Could create:
“CPA Awareness Week” or “Aspergillosis Month”.

⭐ Final: The model closest to what YOU want

Among all of these, the closest parallel is EMBARC/ERS Bronchiectasis:

  • matches airway disease

  • Europe-wide

  • patient + clinician partnership

  • diagnostic under-recognition

  • overlaps with Aspergillus bronchitis

  • strong ERS/ELF involvement

  • data-driven

CF Trust is the best national-level model.
EMBARC is the best international model.
NTM networks are the best analogue group (same patient population).
PH advocacy shows how to create specialist care pathways.
PTLD shows a global disease model integrating TB and CPA risk.