6 Ways to Advocate for Yourself as a PFIC Patient or Parent – And Why It Matters

Written by: Lindsey Gram
Oct 27, 2023

“The disease is so rare, so complex, and so unique, that if people don’t ask questions and share concerns with their doctors, if they don’t participate in the process or if they let themselves feel intimidated, they will find themselves in a state of constant frustration. 
Even with the best specialists in the world, managing the disease can feel like an educated guessing game, at best. I rely on my strong relationships with her doctors in order to breathe, even when they don’t have the answer.” 
-Emily Ventura, PFIC Advocacy & Resource Network Executive Director. 

To advocate means to support, speak up for, recommend, or defend on behalf of another person or yourself. As a child, teenager, or parent of a child with PFIC, learning to advocate gets you involved in your care.

It helps you feel seen, heard and understood. Advocacy leads to better outcomes, better healthcare, and a better future. 

So, how do you go from feeling intimidated and frustrated to feeling empowered to speak up for your child or yourself? We’re here to help– and we’ve got your back. We’ll share our favorite advocacy tips and discuss how getting involved with the PFIC community will help you every step of the way. There are many different ways to advocate. Let’s get started!

1.  Learn

Education is powerful. The more you know about PFIC, the more comfortable and confident you will feel speaking up for yourself and your care. Education is crucial in a rare disease like PFIC. Many people– including some healthcare providers, may have never heard of it. 

Do you struggle to explain what you are going through to others? Are you overwhelmed by how much there is to learn? Or do you feel that PFIC terminology is a different language? Let’s fix that. 

  • Check out the Learn About PFIC section on our website. We go over the basics, the subtypes of PFIC, diagnosis, treatment, and more. 
  • We also offer Educational Webinars for a more interactive learning experience. 
  • If you are interested, take a deeper dive into the Science & Research aspects of PFIC. 

We have a ton of resources for you here at PFIC.org. We want you to use them to become an informed and involved participant in your healthcare and in our network. Education is a building block to better treatment options, a stronger community, and a more vibrant future. 

2. Ask Questions

If you have a question or don’t fully understand a treatment plan, procedure, medication, or anything else– ask away! Questions help you start meaningful conversations with your healthcare providers and the PFIC community. Questions help build trust and lay the groundwork for strong relationships. Ask questions at your doctors’ and specialists’ offices, in healthcare settings, and to others affected by PFIC. 

Get curious about your plan of care and about PFIC. Questions help identify and fix gaps in understanding. Questions help ensure we’re on the right path to finding solutions and solving problems. Questions lead to greater awareness and understanding– and they lead to advancements in research and treatment. 

3. Get Organized

It can be HARD to keep everything straight. You frequently see different doctors and specialists and likely have multiple appointments, lab tests, and procedures. Many parents find making a binder with all their child’s healthcare information to be a game changer. Take this with you to appointments or if you are headed to the hospital. Get access to your child’s medical records and get started. Here’s what to include: 

  • List of current medications and their dosages
  • List of any known allergies or adverse reactions to medications
  • List of current medical supplies used 
  • Progress notes- organized by specialist
  • Printouts of lab test results- organized by date
  • Extra blank paper for questions and notes

Having your healthcare information in one place helps you feel prepared and at ease. Drawing a blank on what you and your doctor last talked about? What your last set of liver enzymes were? The name of that medication that you tried in the past that didn’t really work? There it is- all in one convenient place.

4. Speak Up! 

You know yourself or your child best. And you are a huge asset to your healthcare team. Parents of children with rare diseases can often pick up on subtle changes before even the most experienced healthcare providers. This is because you are with them more than anyone- and you see their routines, normals, and intricacies every single day. 

If something feels off to you- trust that intuition and speak up for your child or yourself. Don’t believe us? There’s even been a scientific study1 done on it. When patients and families speak up, challenges and struggles are identified. This guides treatment, healthcare, and research in more effective ways. 

On this note, if you have a PFIC story that you want to tell– you can submit it to us here. Everyone has a unique and important story to share, and we can learn so much by listening to each other. 

5. Know What To Say 

Your healthcare providers are some of your biggest allies and resources during your journey with PFIC. Despite this, there can be times when you feel like you aren’t being listened to. Everyone is human, and miscommunication can happen despite the best intentions.

 Here are a few key phrases that healthcare providers are trained to listen out for– from their colleagues and from their patients. Use them if you feel like you aren’t being heard. 

  • “It doesn’t seem like we are seeing eye to eye, and it’s really important to me that you fully understand my concerns.”
  • “I want you to see what I am seeing.”
  • “I’m worried.”
  • “I’m uncomfortable.”
  • “Stop.”

Jot down a few notes so you don’t forget anything in the moment. Be respectful and kind, yet firm. Body language helps, too. Sitting up straight, lowering your tone of voice, and speaking clearly with good eye contact will all help to get your point across and communicate your concern to your healthcare providers.

6. Get Involved

When we work together, we are unstoppable. Advocacy is incredible at a personal and individual level– but it can go even further! Getting involved with advocacy work that extends into the greater PFIC community positively impacts all of us.

Being an advocate doesn’t have to be a huge thing that takes a ton of time or effort– seemingly small, quick actions add up and lead to significant changes down the road. Advocacy can be as simple and easy as- 

Being a part of the greater PFIC community in person is a great way to advocate. We host a ton of productive, informative, and meaningful events– and they are super fun, too! Come meet other children, teens, and adults affected by PFIC. Share your hardships and triumphs,  and make some new friends. You’d be surprised by what you can learn, and what you can teach others.   

Community advocacy leads to more funding, more research, and improved treatment options. There are even more ways to get involved here. PFIC advocates are real-life superheroes!

Armed with knowledge, curiosity, and awareness- and backed by the support of our awesome rare disease community, you will become an advocate for yourself, for your child, and for PFIC in no time. When you advocate, you take the power back from this rare disease and change lives for the better. We’ll see you out there! 

Sources-

  1. The Parent Role in Advocating for a Deteriorating Child: A Qualitative Study – PubMed (nih.gov)

When we experience a significant challenge or heartache—whether it be PFIC or something else—our suffering can be divided into two types. There is “clean pain,” which is the pain that arises from outside of our minds and is to a large extent beyond our control. The physical misery of pruritus is clean pain. The exhaustion that you feel after being awake all night with a sick child is clean pain. So is the grief that accompanies losing someone or something you love. Much of our suffering as humans doesn’t fall into the category of clean pain, though. Much of it arises from the thoughts we have about our circumstances, rather than from the circumstances themselves. This sort of pain is known as “dirty pain.”

We all have dirty pain. Dirty pain tends to arise from our resistance to clean pain. Here is one possible example. You are exhausted from being up all night with your sick child (clean pain). You begin thinking things like, “Today is going to be terrible,” or “This is never going to get better,” or “I’m totally alone.” Your body responds to these thoughts as if they are physical realities. If you pause to notice the physical impacts of such thoughts, you might sense that your muscles tense, your posture slumps, your heart rate increases, or that your breathing feels shallow. Odds are, you’ll also find that feelings of exhaustion, overwhelm, and isolation amplify in response to such thoughts, and those amplified feelings help inspire even more doom-and-gloom thinking. It’s a vicious cycle that we all know well. Soon, you might find yourself thinking all of your scariest thoughts, not only about your lack of sleep but also about your child’s health and well-being (or your own). Cue the release of still more stress hormones and a flood of still more overwhelming feelings!

So how do we get out of this cycle? And more specifically, how do we get out of this cycle when our external circumstances are legitimately difficult and scary?

Begin With Self Compassion

When you notice yourself having anxious thoughts, feelings, or physical sensations, begin by acknowledging what you’re feeling. Acknowledge to yourself that what you’re feeling is difficult and that it’s normal. In the exact moment that you’re having an experience of overwhelm, there are other rare disease patients and caregivers living with the same sorts of thoughts, feelings, and sensations. In fact, there are humans all around the world in all kinds of painful circumstances experiencing thoughts, feelings, and sensations that resemble yours. It’s important to pause and let this sink in because the myth of isolation—the fictitious story that no one else is hurting in the way that you are hurting—only adds to your pain. In evolutionary terms, isolation is a threat to our survival, and our bodies respond to mental myths of isolation as if they are dangerous physical realities. Offer your nervous system the kindness and safety of this acknowledgment: “This feels so hard. It’s okay to be feeling what I’m feeling. This is part of being human. I’m not alone in this.”

If you find it difficult to offer yourself kindness and compassion, then take a step back. Instead of showing self-compassion for the part of you that feels anxious, can you be kind to the part of you that struggles to be self-compassionate? Something in your life taught you to be hard on yourself. Those hard-on-yourself parts of you are worthy of kindness and compassion.

If you find it difficult to offer yourself kindness and compassion, then take a step back. Instead of showing self-compassion for the part of you that feels anxious, can you be kind to the part of you that struggles to be self-compassionate? Something in your life taught you to be hard on yourself. Those hard-on-yourself parts of you are worthy of kindness and compassion.

Be kind to your anxiety, too.

Being kind to ourselves means being kind to all our parts—and this includes our anxious parts.

“This being human is a guest house,” wrote the poet Rumi. “Every morning a new arrival. A joy, a depression, a meanness, some momentary awareness comes as an unexpected visitor. Welcome and entertain them all!”

The notion of being kind to your anxiety and welcoming it might seem strange. When you stop to consider what anxiety is at the physiological level, though, it begins to make more sense. When we experience anxiety, our nervous system is in a state of hyperarousal that’s often referred to as “fight or flight.” Our body is responding as if there is a genuine and immediate danger in our environment. When we resist our anxiety, try to shove it away, or berate ourselves for experiencing it, we are layering an additional “fight” on top of our already revved up fight-or-flight state. Relaxation is the antithesis of anxiety. Try responding to your anxiety, even if only for a moment, with a relaxed and friendly, “Oh hey, I thought you might show up today!”

Harking back to Rumi’s metaphor, remember that you are welcoming anxiety as a guest, not as the new owner of your home. This might mean keeping your “guest” informed about house rules. For example, you might decide that you’re going to set aside a “worry window” each day. If you feel your anxiety revving up at other times of day, you can say, “Hi, Anxiety! You’re welcome to be here, but I’m not available to chat with you until 2:15. At 2:15, I’ve got ten minutes set aside just for you, and you can tell me absolutely everything you think I need to hear.” If you do this, be sure you really do show up for your 2:15 appointment! Knowing that you really will carve out that space makes it easier for your anxious mind to calm down a bit and wait its turn. At the end of your appointment with anxiety, do something to mark that ending. Step outside, take several rounds of deep breaths, or turn on a song and dance. Do something that helps you to release the physical energy of anxiety from your body.

Invite Other Guests to the Party

If anxiety is the only guest showing up for you right now, then it’s going to feel difficult to lay out the welcome mat. Invite some other guests in! What makes you feel curious? What sparks your creativity? What makes you feel a sense of connectedness, calm, playfulness, gratitude, love, or awe? What feeling states do you want to invite into your life? Make a list of easy-for-you activities that invite these in, and post your list somewhere where you will encounter it often. Your list should be unique to you, but here are a few examples to get your ideas flowing.

  1. Pet a dog/cat for 1 minute
  2. Text a friend to tell them what you appreciate about them
  3. Go outside and watch the clouds for 2 minutes
  4. Sing along to a favorite song
  5. Take three deep breaths
  6. Smile at yourself in the mirror
  7. Get a 30-second hug from someone you love
  8. Jog to the mailbox
  9. Mindfully sip a favorite drink
  10. Doodle for 5 minutes
  11. Repeat a mantra that you find helpful

It’s natural to wish you could remove pain from your life and from the lives of the people you love. It’s natural to wish you could obliterate both your anxiety and all the external problems that help give rise to it. There is no such thing as a pain-free life, though. But we can reduce our “dirty pain” by learning to respond to all of our suffering—whether “clean” or “dirty”—with greater compassion, acceptance, and creativity.

We would love to hear from you! How do you cope with the emotional and mental ups and downs (and waaay downs) of living with a rare disease or caring for someone who does? Send an email to mentalhealthsupport@pfic.org if you have thoughts, tips, stories, or suggestions to share. We would love to compile your wisdom (without any identifying info) into a resource or blog post that can help other PFIC families, too. If there are topics or questions you would like to see discussed in this blog, please share that with us, as well!

Here is an experience common to many PFIC patients, parents, and loved ones: a period of crisis comes. The experience is brutal, but amazingly, everyone weathers the storm, often with more composure than you might have expected. Things get a bit better. And then, in this period of comparative calm, an emotional or psychological storm blows in, swirling with all of the feelings that couldn’t be felt when you were too busy just trying to survive. You might experience this as anxiety, panic attacks, irritability, rage, depression, or even as pain or other physical symptoms. This can feel confusing. Why am I struggling now when I held it together during the hardest time? It feels confusing, but it’s also so normal. You were strong and focused during a time of crisis. You gave yourself fully to doing what had to be done. There was little space to feel the weight of fear or grief, and so those feelings waited inside your body for a moment when you could experience them.

One common way of experiencing this storm of emotions is through panic attacks. A panic attack is a brief but sudden episode of intense anxiety, accompanied by physical symptoms of fear, like a racing heart and difficulty breathing. Panic attacks aren’t dangerous, but they can feel quite frightening, and they are certainly inconvenient and unpleasant! It’s as if your body is suddenly screaming at you at top volume, with no consideration for the fact that you’re trying to push a grocery cart or lead a staff meeting: “Hey, buddy! We have stuff in here that we need to deal with! So either make some space for that, or I’m going to make the space for you!”

In this post, we will focus on ways to ground yourself during a panic attack or acute episode of anxiety. In a future post, we will talk about ways to address the background (or foreground!) noise of anxiety inside you so that panic attacks are less likely to occur. During a panic attack—much like during a medical crisis—the goal is just to make it through as best as you can. No reasonable person expects you to have the bandwidth for deep psychological work during the peak of a medical crisis, and it isn’t reasonable to expect this during a panic attack either. That work can come later, in a moment of comparative calm. When your heart is pounding and your palms are sweating, it’s enough to simply ride through the moment. 

Acknowledge What’s Happening

When you’re having a panic attack or acute episode of anxiety, you might feel tempted to try to distract yourself out of it. Before introducing any distractions, take a moment to feel what you feel and to compassionately acknowledge to yourself what’s happening. You might need to scream or cry. That’s okay! Find a place where you can give yourself that release. Then offer yourself a compassionate acknowledgment of what’s happening. You might say something like, “I’m having a panic attack. It feels scary, but it’s not dangerous.” Or “I’m feeling really anxious right now. It feels very intense, but the intensity will subside soon.” Or “I’ve been here before. This is hard, but I know how to ride this out.”

Breathe and Count

During a panic attack, it’s natural to breathe rapidly. Your body is in fight-or-flight mode, after all. By changing your breathing pattern, you can begin to coax your body into a more relaxed state. Try taking a slow breath in through your nose and then a slow exhale through your mouth. Many people find it helpful to count as they breathe. For example, if your inhale takes about four seconds, then count to four as you inhale and then exhale to an equal or longer count. The slow breathing—especially the long exhalation—can help bring your nervous system back into balance, and the counting offers your mind something neutral to focus on. Most people find this helpful, but for some, the attention to breath can actually feel anxiety-increasing. If that’s the case for you, then simply skip over this tool and try out the other suggestions below.

3-3-3 Method

In a panic attack, it’s normal to be so swept up by anxiety and by the physical symptoms that accompany it that you lose touch with your surroundings. Assuming you are in a safe place, then coming back into contact with your environment around you can help your panic to abate. To do this, try out the 3-3-3 method.

  1.  Notice and name three things that you can see, allowing yourself a brief moment to focus on each object.

  2. Then notice three sounds that you can hear. This can be a little more difficult, since sounds tend to blend together, but giving your attention to this process can help soothe and ground you. If you can’t find three sounds, make one or two of your own.

  3. Finally, find three things that you can move or touch. They can be your own body parts or objects around you. Feel what it’s like to move your body or to come into contact with different textures.

If this technique works well for you, consider repeating it more than once, tuning into more sights, sounds, and textures.

Move

When we are in a state of panic, our muscles tense and our shoulders tend to round forward. Take a moment to notice your physical posture, and then try adjusting it. The brain and body communicate back and forth, and so when our body takes on the posture of anxiety, our brain assumes that there is something to be anxious about. You can disrupt this loop by assuming a more relaxed and open posture. For example, try allowing your shoulders to roll onto your back, your jaw to unclench, your chest to expand, and your palms to open.

If you’re able to make some bigger physical movements, that might prove even more helpful. Examples could include stepping outside for a breath of fresh air, washing a few dishes, tidying your desk, or—if you’re feeling up to it—more significant exercise like a walk.

A Helpful Reminder

If none of these tools work for you or if you struggle to remember them in the moment, then there’s good news: your panic attack will end even without them! The intensity will abate. Your body will settle.  Reminding yourself of this can be helpful. This too shall pass. Of course, there may be another panic attack to deal with down the line. Practicing these tools—or any tools that you find grounding—in moments of calm or of mild anxiety can help you to build the muscle memory needed to implement them in moments of panic.

Please remember: a panic attack is not a failure. It doesn’t mean that something is wrong with you. It just means there’s work that your body and mind are asking you to do. In other words, you’re a work in progress, and aren’t we all?

We hope the tips above will be useful to you, but if you are experiencing significant distress related to panic attacks, anxiety, or other emotional fallout from PFIC-related trauma, then we encourage you to seek support from your physician, a therapist, or another qualified professional. And as always, we would love to see you in one of our support groups!

Sophie Bourton, mother of Eva Wren, has been a strong advocate for the PFIC Community over the last 2 years. Recently she hosted a fundraiser to support PFIC Network and our partner organization in the UK, Children’s Liver Disease Foundation (CLDF) and was very successful in doing so. We wanted to share Sophie’s experience and the amazing work she and her community have done to advocate for PFIC patients and families. Written below is what Sophie wrote on her fundraiser experience.

Sophie’s Reflection

Our daughter Eva Wren was diagnosed with PFIC 3 back in 2021, since then we have been on a mission to raise awareness and raise vital funds for both the national charity PFIC foundation and the UK based Children’s Liver Disease Foundation. We are passionate about raising funds for these charities as they support research into treatments for PFIC, which currently lacks non-invasive treatment options, and they advocate and support families affected by the disease. 

Sophie, Eva’s Mum’s background is working for charities that advocate for wildlife. Seeing the collective impact of lots of people doing small (or large!) amounts of fundraising and advocacy, has inspired Sophie to campaign for PFIC. Eva is also lucky to have a wonderful Godmother, who organised a brilliant fundraising event this June (as well as fundraising  $2,725 for the PFIC Network last year). Titled ‘Eva’s fundraiser’, the joy filled day consisted of an impressive raffle, Eva’s Dad shaving his head (badly!), puppies, lots of facepainting and bubble machines for the little ones. We were lucky to be supported by materials from the PFIC foundation which helped to spread awareness about the disease. The event raised just under £3,500. We charged £10 for entry on the day, set up a Just Giving Page so that people who couldn’t attend could donate, and raised money through selling raffle tickets. It really was a lovely day and a chance to spend time with friends and family whilst making a real difference. We thank our lucky stars for the support of our friends and family everyday, especially Aunty Gabby!

The wonderful Aunty Gabby with a puppy
Eva enjoying the bubbles
Daddy’s haircut which encourage people to donate, he kept it like this for a week

“Alone we are strong… together we are stronger.” – Unknown

Event Snapshot

This May, PFIC International Alliance members had the honor of participating for a second year in-a-row at the annual meeting of the European Society for Paediatric Gastroenterology Hepatology and Nutrition (ESPGHAN). 

PFIC Advocates Emily Ventura (Parent, PFIC Network Executive Director), Francesca Lombardozzi (PFIC Italia), Bernadetta Skora (PFIC Polska),  Emily Wong (UK), and Melissa Kochanowsky (PFIC Network Program Manager) traveled to Vienna, Austria to represent the global PFIC patient community.

Together, they hosted a booth throughout the entire four-day event and facilitated an International PFIC Meet & Greet! 

International Alliance & Global Affiliate Spotlight

You might recognize Emily Wong, Francesca, and Bernadetta (pictured above in order)  from our virtual PFIC International Alliance meetings. These PFIC parents/superheroes hail from England, Italy, and Poland. 

Emily, Francesca, and Bernadetta have all made amazing contributions for PFIC advocacy, both in their own countries and internationally. 

  • Emily is a strong PFIC advocate and an active supporter of the Children’s Liver Disease Foundation (CLDF), a charity in the UK dedicated to fighting all childhood liver diseases. She recently raised £5000 for the CLDF by running the London Marathon! 
  • Francesca founded the PFIC Italia Network. She also co-created and co-chairs the PFIC International Alliance. Her organization has provided financial support to PFIC families globally, created PFIC educational resources in Italian, and advocated to the Italian government for regulatory approval of PFIC treatment. 
  • Bernadetta started PFIC Network Polska in 2021. She has created PFIC educational resources in Polish, and has played an active role in connecting PFIC families and advocating to the Polish government for regulatory approval of PFIC treatment. 

Their work is a special reminder that any individual can help support the global PFIC community in their own unique way. Even the smallest of acts can produce major ripple effects! Just by participating in the virtual PFIC International Alliance meetings, these parents from different countries were able to meet each other, realize their shared vision for a global get-together with researchers, and bring it to life! 

This event also marked the first time they had ever been in-person together. Having the ability to connect and spend time with peers who truly understand what it means to live with PFIC is an invaluable experience in and of itself. 

Did you know? PFIC Network supports travel costs for patient advocates to participate at events like ESPGHAN through the Global Affiliate Scholarship Program. This program aims to equip patients and families around the world with the resources they need to make an impact through advocacy. If you would like to learn more about how you can get involved in advocacy, contact melissa@pfic.org! 

Bridging Borders by the Booth

ESPGHAN convenes healthcare providers, researchers, and industry professionals from countries in Europe and around the world. The PFIC International Alliance hosted a booth in the ESPGHAN exhibit hall alongside other amazing organizations like the European Liver Patients Association (ELPA) and the European Reference Network for Pediatric Transplantation (ERN – TRANSPLANTCHILD). 

Having a booth at events like these provides a critical opportunity to share the work of PFIC Advocates so that we can open doors for new collaborations. It is also one of the most effective ways to get patient resources directly into the hands of doctors.

More than 30 healthcare providers and researchers at ESPGHAN signed up to receive our communications! We also passed out numerous pamphlets and educational brochures in multiple different languages, including material in Italian and Polish from PFIC Italia and PFIC Polska. 

Fun Fact: The PFIC Educational Brochure is translated into 19 languages!

Rooting for Research

It was amazing to see how many professional researchers around the world are pursuing PFIC! Some of them even presented their PFIC research findings during the event. Attending scientific meetings like ESPGHAN is a great way to see cutting edge PFIC research unfold in real time and identify experts in the field to support and engage for PFIC advocacy and research initiatives. 

Keeping up with the science can be very difficult.  Many of us do not have the time (or the PhD…) to read and digest the constant stream of research publications for PFIC. Watching presentations at meetings can at least provide a helpful snapshot of what some of the experts are up to, and can also reveal ways in which our community can support their work.

The Power of Global Partnerships for PFIC

There are many stakeholders that must come together to make research in rare diseases like PFIC successful. 

According to the U.S. Agency for Healthcare Research and Quality1, a stakeholder is a “person or group with a vested interest in a particular clinical decision, including:

  • Patients, caregivers, and patient advocacy organizations
  • Clinicians and their professional associations
  • Institutional health care providers, such as hospital systems and medical clinics
  • Government agencies
  • Purchasers and payers, such as employers and public and private insurers
  • Health care industry representatives
  • Health care policymakers at the Federal, State and local levels
  • Health care researchers and research institutions.”

It is imperative that we build a strong network of PFIC stakeholders so we can leverage our shared interest in the disease to build collaborative partnerships for improved and accelerated outcomes in treatment and research. One of the essential ways we can build this strong network is by creating opportunities for our community of advocates and stakeholders to interact and learn from each other, like our Meet & Greet at ESPGHAN!

The idea to organize a PFIC International Meet & Greet at ESPGHAN was born out of the PFIC International Alliance. The meeting was planned, coordinated, and made successful thanks to the Alliance members and patient advocates Francesca, Bernadetta, and Emily Wong and Emily Ventura. 

As a result, they were able to invite and connect with clinicians, researchers, and industry representatives from their own countries for discussions on advocacy, healthcare, and research; and gain valuable insights from efforts in other countries. The meeting helped to strengthen familiar relationships and cultivate new ones amongst the variety of PFIC stakeholders attending. 

Building and stewarding partnerships is an essential form of advocacy that must not be limited by borders. We have so much potential to unlock new frontiers in PFIC advocacy and research if we can harness the combined knowledge and strength of our global stakeholder community. 

Come advocate with us! Join our 2023 virtual International Alliance meeting on Saturday, July 15th. Click here to learn more information about the International Alliance and find the links to register for the meeting. 

Want to Represent with some Advocate Swag? Check out PFIC parent Alex Perez’s Etsy store Chosen & Created: Express Your Purpose!

(At a Loss for) Final Words

Attending events like ESPGHAN provides a critical reminder that our PFIC community is strong. 

We are not alone. We are amongst a community of patients, families, and friends; nurses and doctors; researchers at the bench, at the computer, at clinical trials –  and we are in every corner of the world!

There is an unspoken power that is generated when our community comes together. It is a power composed of love, grief, curiosity, fear, compassion, and hope. 

It is a power that is realized when we see another PFIC family for the first time and feel like we’re reuniting not with strangers, but with old friends. When we see doctors and researchers at the podiums and roundtables of events like these, and notice the determination in their eyes to find answers to the same questions we have. 

In these moments when we spark power together, we produce a momentum that is unstoppable. 

1https://www.ncbi.nlm.nih.gov/books/NBK196176/#:~:text=The%20EHC%20Program%20defines%20a,caregivers%2C%20and%20patient%20advocacy%20organizations

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