A growing global effort is underway to better understand the lived experiences of people affected by Primary Ciliary Dyskinesia (PCD), as international organisations join forces to engage directly with the patient community through targeted surveys.

PCD, a rare genetic condition that affects the respiratory system and other organs, remains underdiagnosed and often misunderstood. To address this, leading organisations—including PCD Foundation, PCD Support UK, and BEAT-PCD—are collaborating with national bodies such as PCD Australia to gather critical insights from patients and families worldwide.

These surveys aim to capture real-world data on a range of issues impacting the PCD community, including access to specialist care, diagnostic pathways, treatment burdens, mental health, and quality of life. By hearing directly from those living with the condition, organisations hope to identify gaps in care, highlight disparities between regions, and advocate for improved services and support systems.

“This global approach is essential,”. “While PCD is rare, the challenges faced by patients are shared across borders. By working together and amplifying patient voices, we can build a clearer picture of what needs to change.”

The initiative also reflects a broader shift toward patient-centred research, where individuals are not just subjects of study but active contributors shaping the direction of research and care. Data collected from these surveys will inform future clinical guidelines, research priorities, and policy advocacy efforts.

For countries like Australia, participation in global surveys ensures that local experiences are represented on the international stage. Organisations such as PCD Australia play a key role in encouraging community engagement and ensuring that the unique challenges faced by Australian patients—particularly those in rural and regional areas—are not overlooked.

Ultimately, this collaborative effort marks a significant step forward in raising awareness of PCD and strengthening the global response to rare diseases. By uniting organisations and empowering patients to share their stories, the PCD community is working toward a future of earlier diagnosis, better treatments, and improved quality of life for all those affected.

The current study is “Living with PCD”.  Below for more about the Study and link 

https://pcd.ispm.ch/en/study-info/

Australia is playing a leading role in advancing care for people living with Primary Ciliary Dyskinesia (PCD) through the groundbreaking REPEAT Trial—an innovative research study led by Anne Chang. Catherine Kruljac, President and Founder of PCD Australia, was privileged to serve on the trial’s committee, contributing valuable patient advocacy insight and supporting the representation of the PCD community throughout the study.  

The REPEAT Trial (Reducing Exacerbations in Primary Ciliary Dyskinesia) is a multi-centre, randomised controlled trial conducted across Australia, with sites in the Northern Territory, Queensland, New South Wales, Victoria and Western Australia. This nationally coordinated effort reflects a significant step forward in addressing the limited evidence base for treating PCD. 

Why the REPEAT Trial Matters

PCD is a rare, lifelong condition that affects the body’s ability to clear mucus from the lungs, leading to chronic infections and progressive lung disease. Despite its impact, there have been very few large-scale clinical trials specifically focused on PCD, meaning treatment approaches are often adapted from other respiratory conditions. 

The REPEAT Trial aims to change that.

This study is investigating whether a combination of treatments—specifically the antibiotic azithromycin and the mucolytic medication Erdosteine—can reduce the frequency and severity of respiratory exacerbations in both children and adults with PCD over a 12-month period. (PubMed)

A National and Global Effort

Led by Professor Anne Chang, alongside leading researchers across Australia and international collaborators, the REPEAT Trial represents a powerful example of collaboration in rare disease research. It is funded through the Medical Research Future Fund and supported by key organisations including the Lung Foundation Australia and patient advocacy groups. (CRE in Respiratory Health)

Importantly, the trial includes approximately 100 participants from across the country, ensuring that outcomes reflect real-world experiences across diverse communities. (PubMed)

Potential Impact for the PCD Community

The goal of the REPEAT Trial is not only to reduce chest infections but also to improve long-term lung health, quality of life, and overall disease management. By preventing repeated exacerbations, the study has the potential to slow disease progression and reduce hospitalisations for people living with PCD. (CRE in Respiratory Health)

If successful, the findings could:

• Provide the first strong evidence for routine use of these medications in PCD
• Influence clinical guidelines both in Australia and internationally
• Improve access to effective, evidence-based treatments

The Role of the Community and PCD Australia 

A key strength of the REPEAT Trial is the involvement of the PCD  Australia and their community. Patients and families are central to the research, contributing not only through participation but by helping shape outcomes that matter most—such as quality of life and day-to-day wellbeing.

For PCD Australia, this trial represents a significant milestone. It highlights the importance of Australian-led research and ensures that local patients are part of global progress in understanding and treating PCD.

Looking Ahead

While results are still emerging, the REPEAT Trial signals a shift toward more targeted, evidence-based care for PCD. It brings hope that future treatments will be better tailored, more effective, and grounded in robust clinical research.

Through continued collaboration between researchers, clinicians, and the patient community, Australia is helping lead the way toward improved outcomes for everyone living with PCD.

We are proud to share that Lung Foundation Australia has announced the 2026 Lung Health Legends 💙

Each year, the Foundation recognises some of Australia’s leading respiratory experts for their outstanding contributions to lung health, research, clinical care, and advocacy. Their work continues to drive meaningful progress in prevention, diagnosis, and treatment, and to improve outcomes for people living with lung disease.

We were also honoured to have Stephanie, a new committee member, represent PCD Australia as a carer with lived experience of Primary Ciliary Dyskinesia at a special afternoon tea held at Admiralty House. In this role, she shared valuable personal insights with attendees on the challenges of caring for a child with a rare lung condition.

Stephanie also had the opportunity to connect with other individuals living with PCD who were in attendance, highlighting the importance of community and shared experience within the rare disease space.

We extend our sincere thanks to Her Excellence the Governor General Sam Mostyn and the Lung Foundation for hosting this important event and for highlighting excellence in lung health.

Please join us in congratulating the 2026 Lung Health Legends and thanking them for their dedication to improving lung health outcomes for all Australians.

https://lungfoundation.com.au/news/australias-leading-respiratory-experts-named-lung-foundation-australias-2026-lung-health-legends/

PCD Australia was proud to be part of an inspiring program filled with learning, collaboration, and advocacy. It was a true honour for our President, Catherine Kruljac to co-chair the first-ever dedicated PCD track alongside Dr. Claire Hogg and Phil Robinson. The session addressed key topics including diagnosis, molecular diagnostics, genotypic disparities, Indigenous health, pregnancy and delivery, and novel therapies—marking a significant milestone for the PCD community.

Catherine also participated in “A Hands-On, Patient-First Approach: Clearing the Airways with OPEP Therapy” with Prof Lucy Morgan , Annemarie Lee , and Sonia Cheng . The session demonstrated real patient case studies and OPEP therapy initiation, followed by a dynamic panel discussion. A sincere thank you to @TrudellMedicalInternational for sponsoring the session and to Antoine Mousnier David Sydor and Sonya Gilpin for being such a supportive and engaged team throughout the conference.

On the final day, PCD Australia Board Member Rebecca Borrington took part in a future-focused panel discussion exploring what the next five years should look like in bronchiectasis care. We were encouraged by the strong attention given to PCD among the panel and audience—a clear sign that our message is being heard.

We also extend our warmest congratulations to Ellie Maas , recipient of the David Serisier Rising Star Award, recognising her outstanding PhD research on the genetic characterisation of Australia’s largest primary ciliary dyskinesia cohort. This award honours the legacy of Associate Professor David Serisier, a pioneer in respiratory medicine and an enduring advocate for lung health.

A heartfelt thank you to our wonderful volunteers – John Bachman , Lara Lou, Stephanie March and Robyn Doyle who helped run the PCD Australia stand. Your time, passion, and dedication helped drive meaningful conversations and strengthen our visibility in the broader respiratory health community.

Our sincere thanks to Lung Foundation Australia, Prof Lucy Morgan , Associate Prof Lucy Barr Rachel Thomson and Lena Group for delivering such a professionally run and impactful event. We leave WBC 2025 inspired, connected, and more determined than ever to continue advocating for those living with PCD.

For many people living with Primary Ciliary Dyskinesia (PCD), treatment is not only about managing acute infections. It is also about reducing the long-term cycle of mucus retention, inflammation, and progressive lung damage that can occur when the airways cannot clear properly. In PCD, impaired mucociliary clearance leads to a build-up of secretions in the lungs, which can contribute to chronic infection and inflammation over time.

One treatment families may hear about is a “tune up.” This is an informal term often used to describe a planned course of intravenous (IV) antibiotics, commonly given over around two weeks. A tune up is not always used to treat a sudden acute infection. In some children and adults with chronic suppurative lung disease, including PCD, IV antibiotics may also be used at intervals to reduce bacterial load, calm inflammation, and help bring symptoms and lung health back under better control.

What is a port?

A port, also called an implantable venous access device (IVAD), is a type of central venous access device placed completely under the skin. It has a small chamber under the skin connected to a catheter, with the catheter tip sitting in a large vein close to the heart. Medicines, fluids and blood tests can be given or taken through the port when it is accessed with a special needle.

Ports are designed for adults and children who need more reliable long-term IV access. Unlike a standard cannula, which is short-term, a port can remain in place for months or years if it is functioning well and still needed for treatment.

Why might a child with PCD need one?

For some children with PCD, repeated IV treatment becomes a regular part of life. Over time, repeated cannulas or other temporary lines can become distressing, difficult to place, or simply impractical. A port may be recommended when a child needs frequent or ongoing IV medications, has small or difficult veins, or requires longer-term treatment access. It can also make blood collection easier, reducing the need for repeated needle insertions elsewhere.

A port is not the default option for every child with PCD. The choice depends on how often IV treatment is needed, how difficult IV access has become, what other lines have been used before, and the child’s overall treatment plan.

Claudette’s story

Claudette is a three-year-old child in Sydney living with PCD. In March 2026, she received a port so she could have two weeks of IV antibiotics every three months as part of her treatment plan.

For children like Claudette, a port is usually not a first step. It is often considered after other access options have been used repeatedly and are no longer the most practical or effective way to deliver regular treatment. In that setting, a port can become an important tool in ongoing care.

What families can expect

A port is inserted during a surgical procedure under general anaesthetic. Because the port sits fully under the skin, there is no external line when it is not being used. Children are usually sore around the incision sites for a few days afterwards, and the treating team will explain how to care for the area while it heals. Sydney Children’s Hospitals notes that soreness around the insertion sites is common for about a week after insertion.

Living with a port

One of the benefits of a port is that when it is not accessed, it is mostly hidden under the skin and many children can return to normal day-to-day activities once the site has healed. Children can usually go back to daycare or school, and many normal activities can continue. Guidance from children’s hospitals notes that swimming is generally possible when the port is not accessed, but when the port is accessed with a needle and dressing in place, it should not be submerged in water. Families should also ask their treating team for advice about contact sports or rough play.

Ports do still require ongoing maintenance. When not in regular use, they need to be flushed and locked regularly by a port-trained healthcare professional to help reduce the risk of blockage and infection. Ports can last a long time, but in children they may eventually need to be replaced as the child grows, if the device is no longer positioned correctly, or if complications occur.

When should families seek help?

Families are taught what warning signs to watch for. These can include fever, redness, swelling, heat, pain, discharge, or problems using the port. Sydney Children’s Hospitals advises that if a child with a port has a temperature of 38°C or higher, they should present for urgent medical review because the port can be a possible source of infection.

A treatment tool, not a setback

For families new to the idea, hearing that a child needs a port can feel overwhelming. But in many cases, it represents a move toward more sustainable, planned care. It can reduce trauma from repeated needle attempts, make regular treatment more achievable, and support children who need ongoing IV antibiotics as part of managing their lung disease.

In PCD, where treatment is often long-term and cumulative, a port can become one more practical tool in protecting lung health over time.

Early diagnosis of Primary Ciliary Dyskinesia (PCD) remains one of the biggest challenges for families and clinicians. Because PCD is a rare genetic condition with symptoms that overlap with many other respiratory illnesses, children can often go years without an accurate diagnosis.

In Australia, where access to specialised diagnostics can be limited, it is possible that someone with PCD may develop bronchiectasis and be treated for bronchiectasis without ever identifying PCD as the underlying cause.

To help clinicians identify patients who may need further testing for PCD, researchers developed a clinical prediction tool called PICADAR.

You can read the original research here:
https://pmc.ncbi.nlm.nih.gov/articles/PMC4819882/

PICADAR is a simple scoring system based on seven clinical features commonly seen in people with PCD. By evaluating these factors, clinicians can estimate the likelihood that a patient’s symptoms may be caused by PCD and determine whether specialised diagnostic testing should be considered.

The tool was first developed and validated in respiratory clinics and has since become widely used internationally to help guide referrals for PCD diagnostic assessment.

The 7 Predictive Parameters of PICADAR

The PICADAR score evaluates seven clinical features in patients with persistent respiratory symptoms:

1. Full-Term Birth

Many children with PCD are born at full term rather than prematurely. This detail can help differentiate PCD from conditions more commonly associated with prematurity.

2. Neonatal Chest Symptoms

Respiratory distress in the first days of life is a common early sign of PCD. Newborns may require oxygen support or show breathing difficulties shortly after birth.

3. Admission to a Neonatal Unit

Because of early breathing problems, babies with PCD are more likely to be admitted to a neonatal intensive care or special care nursery shortly after birth.

4. Chronic Rhinitis

Children with PCD often experience persistent nasal congestion and a runny nose from a very young age. This chronic rhinitis typically continues throughout childhood.

5. Ear Symptoms or Hearing Problems

Recurrent ear infections and hearing difficulties are frequently seen in children with PCD due to impaired mucus clearance in the middle ear.

6. Situs Inversus

Around half of people with PCD have a condition called situs inversus, where internal organs are mirrored from their normal positions. When this is present alongside chronic respiratory symptoms, it can be a strong clinical indicator.

7. Congenital Heart Defects

Some individuals with PCD also have congenital heart abnormalities, which can occur alongside the underlying developmental differences affecting the body’s cilia.

These seven factors are combined into a score that helps clinicians estimate the probability of a PCD diagnosis.

How the PICADAR Score Works

Each of these features contributes to an overall score, which estimates the probability of a PCD diagnosis.

A higher score indicates a greater likelihood of PCD, helping clinicians decide when to refer for specialised testing.

A maximum score of 14 points corresponds to a 99.8% probability of having PCD.

PICADAR Score and Probability of PCD

• Score 0–2: <1% probability
• Score 3: ~2% probability
• Score 4: ~5% probability
• Score 5: ~11% probability
• Score 6: ~24% probability
• Score 7: ~45% probability
• Score 8: ~68% probability
• Score 9: ~84% probability
• Score 10: ~93% probability
• Score 11: ~97% probability
• Score 12: ~98% probability
• Score 13: ~99% probability
• Score 14: ~99.8% probability

In clinical practice, a score of 5 or above is often used as a threshold to consider referral for further diagnostic testing.

Why Tools Like PICADAR Matter

For rare diseases like PCD, diagnostic delays are common. Many children experience years of recurring chest infections, chronic cough, or sinus disease before receiving the correct diagnosis.

Tools like PICADAR help clinicians recognise patterns earlier and ensure patients are referred to specialist diagnostic centres, where tests such as:

• Nasal nitric oxide measurement
• Genetic testing
• Ciliary function analysis

can be performed.

Earlier diagnosis allows families and healthcare teams to begin appropriate respiratory management sooner, helping to protect lung function and improve long-term outcomes.

Supporting Earlier Diagnosis in Australia

At PCD Australia, improving early recognition and diagnosis is one of our key priorities.

By raising awareness of clinical tools like PICADAR and advocating for improved diagnostic pathways, we aim to ensure Australians living with PCD receive timely access to specialist care.

Earlier diagnosis leads to better management, better support for families, and ultimately better outcomes for people living with PCD.

Catherine Kruljac, President of PCD Australia, attended the APAA Summit in Canberra, today, March 3rd 2026, joining patient advocacy groups, healthcare leaders, and policymakers from across the country.

The first day of the summit featured a range of insightful presentations and discussions on key national health priorities, with guest speakers including Mark Butler, Mike Freelander, and Monique Ryan.

A National Conversation on Healthcare Reform

The summit brought together diverse voices to explore the most pressing challenges facing Australians living with chronic and complex conditions. Key topics included:

• Patient access to care
• Health system reform
• Medicine availability and approval pathways
• Digital health and innovation
• The role of patient advocacy in shaping policy

Across all discussions, there was a strong focus on improving patient experience, equity, and long-term health outcomes.

The Importance of Lived Experience

A recurring theme throughout the summit was the importance of lived experience in healthcare design and policy.

Patients often face significant but less visible impacts of chronic illness, including:

• Loss of identity
• Disruption to education and employment
• Financial stress and burden on families

There was strong recognition that these experiences must be better understood and embedded into decision-making processes. Advocacy organisations play a critical role in ensuring patient voices are heard and reflected in healthcare reform.

Key Challenges Highlighted

Several systemic challenges were identified:

• Rising rates of chronic disease across Australia
• Inequitable access to care, particularly in rural and regional communities
• Medicine shortages and delays in accessing new treatments
• Fragmented healthcare systems and short-term funding models
• Financial barriers that prevent people from seeking or continuing care

These issues continue to impact patient outcomes and highlight the need for coordinated, national approaches.

A Shift Towards Preventative, Patient-Centred Care

There was broad agreement that Australia must move beyond a reactive “sick care” model towards a more preventative, patient-centred system.

This includes:

• Earlier diagnosis and intervention
• Better coordination across care providers
• Long-term, outcomes-focused healthcare planning

Innovation and the Role of Technology

Speakers also explored the growing role of digital health and artificial intelligence in improving healthcare delivery.

While these technologies offer significant opportunities—particularly in diagnosis, monitoring, and efficiency—there was clear consensus that implementation must include:

• Strong governance and oversight
• Transparency in decision-making
• Ongoing involvement of patients and clinicians

Opportunities for Reform

The summit highlighted several priority areas for policy and system improvement:

• Strengthening Medicare access
• Enhancing chronic disease frameworks
• Accelerating medicine approval pathways
• Addressing ongoing medicine shortages
• Developing nationally consistent patient support systems (including travel assistance for specialist care)

Looking Ahead

The overarching message from the summit was clear:

Australia has a strong healthcare foundation, but meaningful progress will depend on patient-led advocacy, collaboration across sectors, improved data, and a commitment to equity—ensuring that access to care is not determined by postcode, income, or circumstance.

Stephanie March And Joel Taggart Are Urging Councils Across South Australia To Join The Global Chain Of Lights Campaign On 28 February 2026

What if your town hall glowing pink, blue, green and purple for one night could make a local family feel seen?

Two South Australian parents are hoping it will.

Yorke Peninsula advocate Stephanie March and Adelaide Hills advocate Joel Taggart are calling on councils across metropolitan, regional and rural South Australia to light up local landmarks for Rare Disease Day 2026 as part of the national Chain of Lights campaign.

Why Lighting Up Matters For Families Living With Rare Disease

Rare Disease Day is held globally each year on 28 February and shines a light on the more than 300 million people worldwide living with a rare disease.

For Stephanie March, this is deeply personal. She is a rural parent raising a child with a rare disease and founder of community initiative MERCI Co.

“For many families, rare disease is invisible. It means frequent hospital travel, complex care and living with uncertainty – often quietly and often far from specialist services,” Ms March said.

“Seeing a local town hall, structure or community landmark lit up, even for one night, sends a powerful message that families in that town matter and are supported.”

Joel Taggart, a rare disease and community advocate based in the Adelaide Hills, said councils play an important role in creating visible and inclusive communities.

“Lighting up a local landmark is a simple but meaningful way for councils to show that they stand with families living with rare disease,” Mr Taggart said.

“It creates awareness, encourages conversation and helps reduce the isolation many families experience.”

A Simple Way For South Australian Councils To Show Support

While the Women’s and Children’s Hospital Network is hosting its own Rare Disease Day event, Ms March and Mr Taggart wanted to extend awareness beyond hospital walls and into local communities across South Australia.

As independent parents and advocates, not official coordinators, they have contacted all South Australian councils inviting them to participate in the Global Chain of Lights on Saturday 28 February 2026, or Friday 27 February where operational needs require a weekday event.

Councils are being invited to light a landmark, building or community space in the official Rare Disease Day colours – pink, blue, green and purple.

Participation is flexible and designed to be low-effort, using existing lighting infrastructure where available. Councils are encouraged to register their participating locations with Rare Voices Australia as part of the national and international campaign.

Stephanie March and Joel Taggart are also encouraging councils and community organisations taking part to use the hashtag #SARareCare to help show South Australia’s shared commitment to supporting the rare disease community.

Participation across South Australia is already growing, with previous light-ups generating positive community feedback, including at City of Unley and Adelaide Oval in 2025.

Councils without suitable lighting infrastructure are encouraged to take part by displaying Rare Disease Day posters in libraries and public buildings, or by sharing Rare Disease Day messaging through council communication channels.

Free media and promotional assets – including posters, social media tiles, logos and lighting guidance – are available via the global Rare Disease Day website, rarediseaseday.org.

“We would love to see South Australia’s participation continue to grow in 2026, particularly in regional and rural communities where families often feel most disconnected from specialist care,” Ms March said.

Primary Ciliary Dyskinesia (PCD) is a rare genetic condition that affects the function of tiny hair-like structures called cilia, which play a critical role in the respiratory system, sinuses, and reproductive organs.

While PCD is most commonly associated with chronic lung and sinus disease, it can also have a significant impact on fertility in both men and women.

Understanding this connection is essential for individuals with PCD who are planning a family, as well as for clinicians supporting their care. 

How Does PCD Affect Fertility?

Cilia are not only found in the airways — they are also present in the reproductive system.

• In men, similar structures called flagella enable sperm to move.
• In women, cilia line the fallopian tubes and help transport the egg toward the uterus.
  

When cilia do not function properly, as in PCD, this can interfere with natural conception.

Male Fertility and PCD

Men with PCD are often affected by reduced sperm motility, a condition known as asthenozoospermia.

Although sperm may be produced normally, their ability to move effectively is impaired due to dysfunctional flagella.

Key considerations:

• Many men with PCD are subfertile or infertile
• Sperm count may be normal, but movement is reduced Natural conception can be challenging, but not impossible — some men with PCD are able to conceive naturally
  

Fertility options:

Assisted reproductive technologies (ART) have made parenthood possible for many men with PCD, including:

• IVF (In Vitro Fertilisation)
• ICSI (Intracytoplasmic Sperm Injection) — often the most effective option, where a single sperm is injected directly into an egg
  

Female Fertility and PCD

Women with PCD may also experience reduced fertility, although many are still able to conceive naturally.

The issue lies in the fallopian tubes, where cilia help move the egg toward the uterus. When this movement is impaired, it can:

• Delay egg transport
• Reduce the likelihood of fertilisation
• Increase the risk of ectopic pregnancy
  

Key considerations:

• Fertility may be reduced, but not absent
• Some women conceive naturally
• PCD primarily affects the fallopian tubes, meaning IVF can be an effective alternative if natural conception is not achieved

Pregnancy Considerations for Women with PCD

Women with PCD can have successful pregnancies, but may require specialist care.

Because PCD affects lung function, pregnancy can place additional strain on the respiratory system.

Important factors:

• Monitoring of lung health throughout pregnancy
• Coordination between respiratory specialists and obstetric teams
• Early planning and support
  

With appropriate care, many women with PCD go on to have healthy pregnancies and babies.

When to Seek Fertility Advice

If you or your partner has PCD and are trying to conceive, it may be helpful to seek early guidance from:

• A fertility specialist
• A respiratory physician familiar with PCD
• A multidisciplinary care team
  

Early advice can help you understand your options and avoid unnecessary delays.

The Importance of Diagnosis

PCD is often underdiagnosed in Australia, with estimates suggesting that only a small proportion of cases are formally identified (10%).

Because symptoms of PCD overlap with other respiratory conditions, such as bronchiectasis, individuals may experience years of ongoing health issues without a clear diagnosis.

For some, fertility challenges — combined with lifelong respiratory symptoms — maybe the catalyst to seek official diagnosis that PCD could be an underlying cause.

Improving awareness of the broader impacts of PCD, including fertility, is essential to supporting earlier diagnosis, better care, and improved long-term outcomes.

Supporting Australians Living with PCD

At PCD Australia, we are committed to improving awareness, diagnosis, and outcomes for people living with Primary Ciliary Dyskinesia.

This includes recognising the full impact of PCD — not just on respiratory health, but on important life stages such as family planning and fertility.

Can people with PCD have children?
Yes. While fertility may be reduced, many people with PCD can have children, either naturally or with assisted reproductive support.

Is PCD infertility permanent?
Not always. Many individuals with PCD can successfully conceive with treatments such as IVF or ICSI.

Supporting Australians Living with PCD

At PCD Australia, we are committed to improving awareness, diagnosis, and long-term outcomes for people living with Primary Ciliary Dyskinesia.

This includes advocating for holistic care — recognising that PCD affects not just the lungs, but many aspects of life, including family planning and fertility.

PCD Australia recently circulated a Listening Survey to gain a greater understanding about the PCD community’s needs and what they want PCD Australia to focus on.

While this number of people who completed the survey was a little disappointing, we did gain some valuable insights. Most responses were from parents while around 25% were from people with PCD.