Season 5, Episode 17: In conversation with Beatriz Kaori Miyakoshi Lopes

I am excited to welcome Beatriz “Bia” Kaori Miyakoshi Lopes to the podcast! 🗣️🦓✨
About Bia:
Bia Kaori is the first patient advocate for FDMAS in Latin America. Her journey in social media began recently, but it has already been a wild and impactful ride. Living with not one but two rare diseases, and with a master’s research background focused on accessibility and infrastructure, Bia is dedicated to sharing knowledge and striving to make the world a little better.
As the first patient advocate for FDMAS in and from Latin America, Bia recognizes the significant lack of answers, cures, information, and patient voices in the region. While FDMAS remains globally under-researched, the scarcity of resources in Latin America is even greater. At 28 years old, Bia was deeply moved upon finally meeting others with the same condition—an experience that required traveling to the United States.
An interview with the FDMAS Alliance to share her story served as a turning point, inspiring Bia to expand her advocacy through social media. There, she documents life with FDMAS by sharing personal experiences, limitations, struggles, and successes.
Today, Bia continues to use her platform to showcase everyday realities, break stigma around accessibility and rare diseases, and ensure that voices like hers are heard in Latin America and beyond.
What is Fibrous Dysplasia/McCune-Albright Syndrome?:
Fibrous dysplasia (FD) is a rare disease in which normal bone is replaced with scar-like fibrous tissue. This condition can occur in any bone in the body and sometimes affects multiple bones. The most common sites are the bones of the skull and face—Bia has hers in her left palate, cheek, and eye bone.
Fibrous dysplasia can occur alone or as part of McCune-Albright Syndrome (MAS), in which the endocrine system and skin are also affected.
These are two very rare, chronic diseases without a cure.
Resources Bia shared?:
@fdysplasiaorg
https://fdmasalliance.org

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#RareDiseaseAwareness #FightForACure #RareButReal #InvisibleIllness #RareDiseaseCommunity #RareDiseasePodcasts #ListenToRareVoices #RareStories #RareDiseaseAwareness

Season 5, Episode 16: In conversation with Carolyn Haeler

In this special episode, Carolyn and I have a meaningful and relatable conversation about how we adapted to our dietary restrictions in a world where it is challenging. Carolyn’s story is remarkable, because instead of waiting for the change, she initiated the change. She is the CEO of Founder of Mightylicious Gluten Free Cookies,

To know Carolyn is to know she is a lifelong foodie, Carolyn’s love language has always been baking. In 2012, at the age of 31, she was diagnosed with celiac disease—a diagnosis that would change her life for better and for worse. After 9 months of illness, she was finally able to heal her body from the inside out. Carolyn became passionate about functional ingredients, nutrition, and living a gluten-free life. This led her to founding Mightylicious Gluten Free Cookies, a woman-owned company that produces Gluten Free Cookies (7 varieties including vegan and vegetarian options) as well as Three new Gluten Free Flour Mixes.  

They are available online at our website, Amazon and many retail outlets throughout the USA including Walmart and Krogers.  We were just awarded the Good Housekeeping 2025 Best Snack Award for our Mightylicious Gluten Free Oatmeal coconut cookies.

Where to find Carolyn?: 

https://www.instagram.com/mightyliciousfoods/

https://www.facebook.com/mightyliciousfoods

https://www.tiktok.com/tag/mightylicious

Season 5, Episode 16: In conversation with Brendan James Clark

→ About Brendan: Brendan is a patient who had a Desmoid Tumor. He was diagnosed with a desmoid tumor in his  abdomen at the age of 19, following a car accident, extended hospital stays and major abdominal surgery to confirm the diagnosis. This experience has given him  a unique perspective, both as a patient and future doctor.

He is currently a third-year medical student with a strong passion, especially for surgery and oncology. His  journey has been shaped by his personal experience as a desmoid patient, which has shown him the value of improving patient care, raising awareness for rare diseases, and advocating for better overall understanding. He wants to use his experience as a patient to become the kind of doctor he wishes he had throughout his journey.

→ What is a Desmoid tumor? They are rare growths that derive from connective tissue. 

→ Resources Brendan shared?:

https://dtrf.org/

https://rarediseases.org/rare-diseases/desmoid-tumor/

https://www.cancer.gov/pediatric-adult-rare-tumor/rare-tumors/rare-soft-tissue-tumors/desmoid-tumor

Season 5, Episode 14: In conversation with Camryn Berry

→ About Camryn: Camryn Berry is a young adult living with Fibrous Dysplasia/McCune-Albright Syndrome. Through her experiences getting diagnosed with her condition as a child, growing up in rural Maine, she has had numerous experiences in her rare disease odyssey. Most importantly, being the first female child to receive a medication recommended by the NIH, ending her need for further surgeries.Now as an adult, Camryn is a remarkable individual who is paving a bright path forward as a “patient scientist”, a Ph.D. candidate at Boston Children’s Hospital and Harvard Medical School.  She has a unique intersection of her experiences as a patient living with FD/MAS and a Ph.D. researcher studying the disease. This journey has highlighted the importance of incorporating patient perspectives in shaping research questions, study designs, and outcome measures that reflect patient priorities. She is committed to demonstrating how meaningful collaboration between researchers and patients can lead to more impactful and relevant discoveries.
→ What is Fibrous Dysplasia/McCune-Albright Syndrome?: Fibrous dysplasia (FD) is a rare disease where normal bone is replaced with scar-like fibrous tissue. This condition can occur in any bone in the body and can sometimes affect more than one bone. The most common sites for fibrous dysplasia are the bones in the skull and face - mine is in my left palate, cheek, and eye bone. Fibrous dysplasia can occur alone or as part of McCune-Albright Syndrome (MAS). In MAS, the endocrine system and skin are also affected.

→ Resources Camryn shared?:

@fdysplasiaorg
@everylifeorg
@foundationforfacesofchildren

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#RareDiseaseAwareness #FightForACure #RareButReal #InvisibleIllness #RareDiseaseCommunity #RareDiseasePodcasts #ListenToRareVoices #RareStories #RareDiseaseAwareness #PodcastLife #PodcastsToListenTo #PodcastRecommendations #PodcastCommunity

#FibrousDysplasia

#McCuneAlbrightSyndrome

#FDMASAwareness

Season 5, Episode 13: In Conversation with Clio Lang
→ About Clio: Clio Lang, speaker, model and author of “No One’s Daughter” is a brain surgery survivor dedicated to finding a cure for hydrocephalus. She is a Rare disease legislative advocate through the Every Life Foundation.
It is important to note that Hydrocephalus can happen to anyone. Over 1 million patients in America have hydrocephalus and shunts have a 50% failure rate. Meaning that brain surgery is the only treatment for this condition.
She shares her experience of living with this condition—managing daily life as a rare disease patient, navigating the medical system, and finding joy even in difficult moments. Clio taught me the power of storytelling, the importance of using your voice to drive change, and what it means to stand firmly on the right side of a cause.
→ What is Congenital Hydrocephalus (Hydro)?: It is a condition where the brain cannot drain CSF itself and requires a brain shunt. She has a programmable shunt called a Codman Certas Plus, which is connected to a catheter running from her brain to her abdomen. She has a rare form of hydrocephalus resulting from a brain bleed at birth.
→ Resources Clio shared?: 
@hydroassoc
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#RareDiseaseAwareness #FightForACure #RareButReal #InvisibleIllness #RareDiseaseCommunity #RareDiseasePodcasts #ListenToRareVoices #RareStories #RareDiseaseAwareness #PodcastLife #PodcastsToListenTo #PodcastRecommendations #PodcastCommunity #HydrocephalusAwareness #BrainHealth #LivingWithHydrocephalus #HydroWarrior #MedicalAdvocacy

Season 5, Episode 12: In conversation with Siobhain Carolan

→ About Siobhain: Siobhain Carolan is a rare disease patient with Congenital Myasthenic syndrome and was misdiagnosed for 10 years. Despite her challenges, she has found her voice in advocacy, especially with the Everylife Foundation. I met Siobhain in 2023 through Rare Disease Week on Capitol Hill. She is a fellow Connecticut rare warrior and a dear friend. 
She is using her voice to fight for a better tomorrow on all levels from her hometown in Connecticut to Washington D.C. Her next and most exciting venture will be on May 31  in Boston, where “Team Shivvy” will be walking to raise awareness and funds with @myastheniaorg .

All funds raised support the Myasthenia Gravis Foundation of America (MGFA), the largest, leading patient advocacy organization solely dedicated to finding a cure for the rare neuromuscular disease myasthenia gravis.
→ What is Congenital Myasthenic Syndrome?: CMS is a group of inherited neuromuscular disorders that cause muscle weakness due to problems at the neuromuscular junction, where nerves and muscles connect.
#RareDiseaseAwareness #FightForACure #RareButReal #InvisibleIllness #RareDiseaseCommunity #RareDiseasePodcasts #ListenToRareVoices #RareStories #RareDiseaseAwareness #PodcastLife #PodcastsToListenTo #PodcastRecommendations #PodcastCommunity #MyastheniaGravis #MGWarrior #ChronicIllness #AutoimmuneDisease #MGStrong #NeuromuscularDisease #InvisibleIllness #RareDisease #MGAwareness #FightMG

Season 5, Episode 12: In conversation with Shea Linton

→ About Shea: She is a patient advocate living with Idiopathic Thrombocytopenic Purpura (ITP) and Hypermobile Ehlers-Danlos Syndrome (hEDS). She has served as a South Carolina Representative through the Young Adult Rare Representatives (YARR) organization since February 2022. As a graduate of Winthrop University, she plans to attend medical school to pursue her goal of becoming a pediatrician. She hopes to use her personal experience living with multiple rare diseases to spread awareness about the issues facing the rare disease community. Raised in rural South Carolina, she seeks any opportunity to educate on the disadvantages surrounding a lack of access to care.
→ What is Idiopathic Thrombocytopenic Purpura (ITP)?: Idiopathic Thrombocytopenic Purpura (ITP) is a rare autoimmune condition characterized by a low platelet count, leading to easy bruising and bleeding.
→ What is Hypermobile Ehlers-Danlos Syndrome (hEDS)?: Hypermobile Ehlers-Danlos Syndrome (hEDS) is a heritable connective tissue disorder that causes generalized joint hypermobility, joint instability, and chronic pain. hEDS is also associated with a variety of other symptoms and related conditions that affect many different areas of the body.
→ Where to find Shea?: 
@shea_linton
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#RareDiseaseAwareness #FightForACure #RareButReal #InvisibleIllness #RareDiseaseCommunity #RareDiseasePodcasts #ListenToRareVoices #RareStories #RareDiseaseAwareness #PodcastLife #PodcastsToListenTo #PodcastRecommendations #PodcastCommunity #IdiopathicThrombocytopenicPurpura #ITPawareness #PlateletDisorder #HypermobileEDS #hEDSawareness #EhlersDanlosSyndrome #connectivetissuedisorder

Season 5, Episode 10: In conversation with Aaron Blocker

→ Who?: Aaron Blocker is a rare disease patient, content creator and Executive Director of the Mississippi Rare Disease Advisory Council.
He was born showing signs and symptoms of Hypophosphatasia (HPP), but didn’t receive a formal diagnosis until the age of 25.
Since then, he has undergone 27 surgeries related to HPP, including four total hip replacements beginning at age 20. In addition to HPP, he also lives with Crohn’s disease.
He is passionate about advocating for the rare disease community and currently serves as the Executive Director of the Mississippi Rare Disease Advisory Council. Some of the most valuable resources in his rare disease journey have been NORD and the Soft Bones Foundation, which focuses specifically on HPP.
Outside of advocacy, he’s a self-proclaimed science nerd. He holds a Master’s degree in Biomedical Research and works as a Population Health Data and Analytics Consultant for a hospital system. His combination of lived experience and scientific expertise fuels his mission to raise awareness, foster connection, and push for improved care and policy for those affected by rare diseases.
→ Rare Disease Connection: Aaron is a rare disease patient and advocate.
→ What is Hypophosphatasia (HPP)?: Hypophosphatasia is an ultra-rare metabolic bone disease caused by a genetic mutation in the tissue nonspecific alkaline phosphatase (TNSALP) gene. Which doesn’t allow my body to make enough alkaline phosphatase, an enzyme important for bone health.
→ Where to find Aaron?:
@aaronblocker_
→ Resources Aaron shared?:
https://rarediseases.org/mondo-disease/hypophosphatasia/
https://softbones.org

https://medlineplus.gov/genetics/condition/hypophosphatasia
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#RareDiseaseAwareness #FightForACure #RareButReal #InvisibleIllness #RareDiseaseCommunity #RareDiseasePodcasts #ListenToRareVoices #RareStories #RareDiseaseAwareness #PodcastLife #PodcastsToListenTo #PodcastRecommendations #PodcastCommunity #Hypophosphatasia #HPPawareness #RareDisease #LivingWithHPP #BoneHealthMatters #ChronsDisease #IBDAwareness #ChronicIllness #FightUC #GutHealth

Season 5, Episode 9: In conversation with Shezad Nawab MBE

Meet Shezad – a trailblazing Deaf entrepreneur, business strategist, and international speaker with over two decades of experience in business strategy, venture capital, executive coaching, and management consultancy. Shezad is on a mission to break down communication barriers and champion inclusive business practices that empower Deaf professionals around the globe.

His Legacy of Excellence Includes:

• 9 Business Awards – Celebrated for groundbreaking achievements in entrepreneurship

• MBE 2017 – Honored for outstanding service in business and diversity

• Author of Born Deaf To An MBE – A powerful memoir chronicling his inspiring life journey

• Fluent in 6 Sign Languages – Including BSL, ASL, SASL, MSL, IS, and Arabic Sign

Tune in to hear Shezad’s unique insights, untold stories, and powerful conversations that push the boundaries of what’s possible.

Season 5, Episode 8: In Conversation with Lauren Schoeller

→ Who?: Lauren Schoeller grew up in a small New Hampshire town, attending the University of New Hampshire for undergrad. She completed her Master’s in Biomedical Sciences through Tufts University School of Medicine and is applying to medical school as an aspiring orthopedic surgeon.  Now, she is a Clinical Assistant in Boston, MA, with prior experience in clinical research. 

She was born with a rare genetic condition called Conradi-Hunermann Syndrome, which primarily impacts the musculoskeletal system, but also affects her hearing, vision, and skin. Lauren has undergone nearly 30 surgeries, ranging from limb lengthenings, a spinal fusion, hip reconstructions, and others in order to regain functionality and reduce pain. Patient advocacy is one of her greatest passions that stemmed from her experiences as a patient and has informed her perspective as a future healthcare professional. She is an Executive Board Member for Miles4Hips, a patient-driven hip dysplasia organization, the Director of Beautifully Made Community, a limb difference advocacy organization, and has most recently joined the Young Adult Rare Representatives through the EveryLife Foundation for Rare Diseases to take an active role in advocating for policy impacting the rare disease community. In her free time, Lauren enjoys exploring Boston, spending time with friends and family, and staying active— she is training for her first triathlon!

→ Rare Disease Connection: Lauren is a rare disease and advocate patient living with Conradi-Hunermann Syndrome. 

→ What is Conradi-Hunermann Syndrome?: It primarily impacts the musculoskeletal system, but also affects her hearing, vision, and skin. Lauren has undergone nearly 30 surgeries, ranging from limb lengthenings, a spinal fusion, hip reconstructions, and others in order to regain functionality and reduce pain.

→ Where to find Lauren?:
@lauren.schoeller
@patientperspectivespod
→ Resources Lauren shared:
@beautifullymade_community
@miles4hips

Season 5, Episode 7: In Conversation with Erin Danzer
→ Who?: Erin Danzer is a 26 year old and is in the process of transferring to Cal-state to pursue her bachelor’s in Communications. She loves to write and craft in her spare time. She is a fierce advocate for FOP, rare disease and the chronic illness community, utilizing her social media to raise awareness.
→ Rare Disease Connection: Erin is a rare disease and advocate patient living with Fibrodysplasia ossificans progressiva (FOP).
→ What is Fibrodysplasia ossificans progressiva (FOP)?: It is an extremely rare genetic connective tissue disorder characterized by the abnormal development of bone in areas of the body where bone is not normally present (heterotopic ossification), such as the ligaments, tendons and skeletal muscles. Specifically, this disorder causes the body’s skeletal muscles and soft connective tissues to undergo a metamorphosis, essentially a transformation into bone, progressively locking joints in place and making movement difficult or impossible.
→ Where to find Erin?:

@erinlovesyourface

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#RareDiseaseAwareness #FightForACure #RareButReal #InvisibleIllness #RareDiseaseCommunity #RareDiseasePodcasts #ListenToRareVoices #RareStories #RareDiseaseAwareness #PodcastLife #PodcastsToListenTo #PodcastRecommendations #PodcastCommunity #FOP #FibrodysplasiaOssificansProgressiva #RareDisease #FOPAwareness #FOPResearch #FOPCommunity #FOPWarriors #FightFOP #CureFOP #fopsupport

Season 5, Episode 6: In Conversation with Sydney Alper

→ Who?: Sydney Alper, a best buddies ambassador and an advocate for people with disabilities.

→ Rare Disease Connection: Sydney has  as a rare chromosome disorder called Chromosome 18q-proximal deletion. 

→ What is Chromosome 18q proximal deletion: It  is a genetic disorder that occurs when a portion of the long arm (q) of chromosome 18 is missing. This deletion typically involves the region near the centromere, the point where the two arms of a chromosome are joined. 

→ Where to find Sydney?:

@disabilitiesunite21

Season 5, Episode 5: In Conversation with Laura Romano

Rare Disease Week Special Episode!!!

→ Who?: Laura Romano, Program Manager for @hearusyarr and a rare disease patient. 

→ Rare Disease Connection: Laura oversees the young adult rare and is a indvidual with Classical-like Ehlers-Danlos Syndrome (clEDS).

→ What is YARR?: Young Adult Rare Representatives (YARRs) are highly motivated rare disease community members between 16 and 30 years old. The main purpose of YARR is to instill confidence in the next generation of rare disease advocates.

→ What is Classical-like Ehlers-Danlos Syndrome (clEDS):  a heritable connective tissue disorder that causes severe skin hyperextensibility, velvety skin texture, generalized joint hypermobility, and easy bruising. clEDS is an ultra-rare disorder that affects less than 1 in 1 million people.

→ Where to find Laura and YARR?:

https://everylifefoundation.org/young-adult-representatives/

https://everylifefoundation.org/

sharingmystripes (Laura) on Instagram

hearusyarr (YARR) on Instagram

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#RareDiseaseAwareness #FightForACure #RareButReal #InvisibleIllness #RareDiseaseCommunity #RareDiseasePodcasts #ListenToRareVoices #RareStories #PodcastForACause #RareDiseaseAwareness #PodcastLife #PodcastsToListenTo #PodcastRecommendations #PodcastCommunity #ClassicalEDS #clEDS #EhlersDanlosSyndrome #CollagenDisorder #HypermobileJoints #SkinHyperextensibility #GeneticCondition #RareDisorder #ConnectiveTissueDisorder #EDSTypeI

Season 5, Episode 4: In conversation with Bailey Miller.

→ Who?: Bailey Miller, a rare disease patient, a young adult rare representative

→ Rare Disease Connection: Bailey is a patient living with Occult Tethered Cord Syndrome & Syringomyelia.

→ What is Tethered cord syndrome: is a stretch-induced functional disorder associated with the fixation (tethering) effect of inelastic tissue on the caudal spinal cord, limiting its movement. This abnormal attachment is associated with progressive stretching and increased tension of the spinal cord as a child ages, potentially resulting in a variety of neurological and other symptoms. 

Syringomyelia: the development of a fluid-filled cyst within the spinal cord. The cyst, which is sometimes called a syrinx, can grow larger over time. 

→ Where to find Bailey?:

@

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#RareDiseaseAwareness #FightForACure #RareButReal #InvisibleIllness #RareDiseaseCommunity #RareDiseasePodcasts #ListenToRareVoices #RareStories #PodcastForACause #RareDiseaseAwareness #PodcastLife #PodcastsToListenTo #PodcastRecommendations #PodcastCommunity #TetheredCordSyndrome #TCSAwareness #SpinalCordDisorders #TetheredCord #Syringomyelia #SyringomyeliaAwareness #ChronicPain #SpinalCordDisorders #InvisibleIllness

Season 5, Episode 3: In conversation with Ken Sullivan

→ Who?: Ken Sullivan, a rare disease, patient and advocate. 

→ Rare Disease Connection: Ken patient living with Hypermobile Ehlers-Danlos Syndrome; Periodic Limb Movement Disorder.

→ What is Hypermobile Ehlers-Danlos Syndrome: Hypermobile Ehlers-Danlos syndrome (hEDS) is a heritable connective tissue disorder that causes generalized joint hypermobility, joint instability, and chronic pain. hEDS is also associated with a variety of other symptoms and related conditions that affect many different areas of the body.

Periodic Limb Movement Disorder: Periodic limb movement disorder is rarely a primary disorder. It is mainly associated with restless leg syndrome, which may be primarily idiopathic or secondarily due to pregnancy or systemic disorders, particularly iron deficiency and chronic renal insufficiency.

Season 5, Episode 2: In conversation with Wes Michael

→ Who?: Wes Michael, the President and Founder of Rare Patient Voice

→ Rare Disease Connection: Wes Michael founded Rare Patient Voice in 2013 to give patients and caregivers with rare diseases the opportunity to voice their opinions in research studies.

→ What is Rare Patient Voice: Rare Patient Voice empowers patients and family caregivers to share their voices with researchers and companies developing products, devices, and treatments to improve lives. Their vision is to include the patient voice in research and ultimately improve the lives of patients everywhere. Rare Patient Voice is built on the core values of being a supportive resource for their

patients, a reliable partner to our clients, a responsible employer for their staff, and a

good citizens in their community. They are always listening to three key voices -- their

patients, clients, and employees. 

→ Where to find Wes and Rare Patient Voice?:

https://www.linkedin.com/in/wesmichael

https://www.instagram.com/rarepatientvoice

https://www.facebook.com/rarepatientvoice

Season 5, Episode 1: In Conversation with Carter Hemion

→ Who?: Carter Hemion, a trailblazing advocate in the rare disease, disability and immunocompromised spaces.

→ Rare Disease Connection: Carter is an individual living with Ehlers-Danlos syndrome, Mast Cell Activation and Gastroparesis.

→ What is Ehlers-Danlos Syndrome: Defined by the National Organization of Rare Diseases (NORD) Ehlers-Danlos syndrome (EDS) is a group of related disorders caused by different genetic defects in collagen. Collagen is one of the major structural components of the body. Collagen is a tough, fibrous, protein, and serves as a building block essential in both strengthening connective tissue (e.g. bones) and providing flexibility where needed (e.g. cartilage).

→ Where to find Carter?:

@carter_cricket

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#RareDiseaseAwareness #FightForACure #RareButReal #InvisibleIllness #RareDiseaseCommunity #RareDiseasePodcasts #ListenToRareVoices #RareStories #PodcastForACause #RareDiseaseAwareness #PodcastLife #PodcastsToListenTo #PodcastRecommendations #PodcastCommunity #EhlersDanlosSyndrome #EDS #ChronicPain #HypermobileEDS #InvisibleIllness #MastCellActivation #MCAS #ChronicIllness #AllergySymptoms #InvisibleDisability

Season 4, Episode 11: In conversation with Madison Bowe. 

Who?: Madison Bowe, an incredible patient advocate.

Rare Disease Connection: Madison is an individual living Stiff Person Syndrome. She is leveraging her experience with a rare disease and the challenges of her diagnostic journey to advocate for a better future for others facing similar health struggles.

What is Stiff Person Syndrome: Defined by the National Organization of Rare Diseases (NORD )Stiff person syndrome (SPS) is a rare acquired neurological disorder that most often causes progressive muscle stiffness (rigidity) and repeated episodes of painful muscle spasms. Muscular rigidity often fluctuates (i.e., grows worse and then improves) and usually occurs along with the muscle spasms. Spasms may occur randomly or can be triggered by a variety of different events or circumstances including a sudden noise, light physical contact or when exposed to cold. The severity and progression of SPS varies from one person to another.

Where to find Madison?:

@catholicinspiration09 on Instagram or madisonbow95@yahoo.com

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#RareDiseaseAwareness #FightForACure #RareButReal #InvisibleIllness #RareDiseaseCommunity #RareDiseasePodcasts #ListenToRareVoices #RareStories #PodcastForACause #RareDiseaseAwareness #PodcastLife #PodcastsToListenTo #PodcastRecommendations #PodcastCommunity ##StiffPersonSyndrome #SPSAwareness #RareDisease #AutoimmuneDisorders #FightForSPS

Season 4, Episode 10: In Conversation with Patrick James Lynch, CEO of Believe Limited

→ Who?: Patrick James Lynch is the founder and CEO of Believe Limited, a media production company dedicated to telling the stories of inspiring individuals overcoming health challenges, particularly those in the bleeding disorders community. 

→ Rare Disease Connection: Patrick is an individual living with Hemophilia A. Based on his own personal experiences with his condition, and his passion for film and media – he teamed up with Ryan Gielen to create their first project was Stop The Bleeding!, a comedic web series for young people with hemophilia. 

→ What is Hemophilia A?: Defined by the National Organization of Rare Diseases (NORD) Hemophilia A, also known as classical hemophilia, is a genetic bleeding disorder caused by insufficient levels of a blood protein called factor VIII. Factor VIII is a clotting factor. Clotting factors are specialized proteins that are essential for proper clotting, the process by which blood clumps together to plug the site of a wound to stop bleeding. Individuals with hemophilia A do not bleed faster or more profusely than healthy individuals, but because their blood clots poorly, they have difficulty stopping the flow of blood from a wound.

→ Where to find Patrick?: 

https://www.believeltd.com/

https://www.instagram.com/believeltd/

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#RareDiseaseAwareness #FightForACure #RareButReal #InvisibleIllness #RareDiseaseCommunity #RareDiseasePodcasts #ListenToRareVoices #RareStories #PodcastForACause #RareDiseaseAwareness #PodcastLife #PodcastsToListenTo #PodcastRecommendations #PodcastCommunity #ListenUp #HemophiliaA #BleedingDisorder #HemophiliaAwareness #FactorVIII #LivingWithHemophilia