March PKU & Brain Health Update:
- Rare Disease Day equity report,
- PKU research, pancake recipes,
- brain injury app trials,
- and a book sale ending 7th March!
Share your story & support the community.

https://www.pigpen.page/march-2026/

#pku #rarediseaseawareness #shareyourstory #phenylketonuria #braininjury

𝗥𝗮𝗿𝗲 𝗗𝗶𝘀𝗲𝗮𝘀𝗲 𝗗𝗮𝘆 – 𝗙𝗲𝗯𝗿𝘂𝗮𝗿𝘆 𝟮𝟴, 𝟮𝟬𝟮𝟲
This Rare Disease Day, remember that rare diseases affect millions globally but often go unnoticed. With over 6,000 rare conditions identified, many patients face delayed diagnoses, limited treatment options, and emotional and financial struggles.

𝗪𝗵𝘆 𝗶𝘁 𝗺𝗮𝘁𝘁𝗲𝗿𝘀:
- Rare diseases affect fewer than 1 in 2,000 people but impact multiple organ systems and require specialized care.
- Misdiagnosis is common due to overlapping symptoms with more common illnesses.
- Collaborative research and awareness can lead to better diagnostics and therapies.
- Support for patients and families is crucial to improve quality of life.

𝗧𝗵𝗶𝘀 𝘆𝗲𝗮𝗿’𝘀 𝘁𝗵𝗲𝗺𝗲, “𝗠𝗼𝗿𝗲 𝘁𝗵𝗮𝗻 𝘆𝗼𝘂 𝗰𝗮𝗻 𝗶𝗺𝗮𝗴𝗶𝗻𝗲,” highlights the broad impact of rare diseases beyond health, including social and emotional challenges. Let’s stand in solidarity with patients and advocate for more research and resources.

#RareDiseaseDay #MoreThanYouCanImagine #RareDiseaseAwareness #PatientSupport #Healthcare #MedicalResearch #NIH #ORDI #ChronicIllness #RareButStrong #SCABPharmacy

🧬 Genomic testing isn’t just about data—it’s about real people, real stories, and real lives.
In my latest blog, I shared my lived experience of Sapropterin testing with NHS Staff.

What would you have said?

🔗 Read more: [link in bio] or visit www.pigpen.page/lived-experiences-of-genomic-testing/

#Genomics #PatientStories #RareDiseaseAwareness #Healthcare

𝗔𝘂𝗴𝘂𝘀𝘁 𝗶𝘀 𝗦𝗽𝗶𝗻𝗮𝗹 𝗠𝘂𝘀𝗰𝘂𝗹𝗮𝗿 𝗔𝘁𝗿𝗼𝗽𝗵𝘆 (𝗦𝗠𝗔) 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗠𝗼𝗻𝘁𝗵, dedicated to raising support and knowledge about this rare hereditary neurological disorder. SMA causes the gradual loss of motor neurons in the spinal cord, leading to muscle weakness, difficulty with voluntary movements, swallowing, breathing, and scoliosis. It is a leading genetic cause of infant mortality but can also affect older children and adults in milder forms. Early diagnosis and a combination of treatments—including medication, physical therapy, and supportive care—can help improve quality of life. This month, let’s unite to educate, fund research, support families, and bring hope for a future cure.

#SMAAwarenessMonth #SpinalMuscularAtrophy #RareDiseaseAwareness #MotorNeuronDisease #MuscleWeakness #EarlyDiagnosis #SupportSMAFamilies #GeneticDisorders #ResearchForACure #PhysicalTherapy #HealthcareSupport #SCABPharmacy

𝗨𝗻𝗱𝗲𝗿𝘀𝘁𝗮𝗻𝗱𝗶𝗻𝗴 𝗖𝗟𝗢𝗩𝗘𝗦 𝗦𝘆𝗻𝗱𝗿𝗼𝗺𝗲: 𝗕𝗿𝗶𝗻𝗴𝗶𝗻𝗴 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝘁𝗼 𝗮 𝗥𝗮𝗿𝗲 𝗖𝗼𝗻𝗱𝗶𝘁𝗶𝗼𝗻

CLOVES Syndrome is a rare congenital disorder involving overgrowth of fatty tissue, vascular malformations, skin abnormalities, and skeletal issues. Early diagnosis and specialized care are crucial for managing this complex condition and improving quality of life.

Expert multidisciplinary care, advanced diagnostic tools, and treatment options like surgery, targeted medications, and physical therapy can help control symptoms and prevent complications.

Join us in spreading awareness on #ClovesSyndromeAwarenessDay to support patients and families affected by this rare disorder.

𝗞𝗲𝘆 𝗦𝗶𝗴𝗻𝘀 𝘁𝗼 𝗪𝗮𝘁𝗰𝗵 𝗙𝗼𝗿:
- Unusual fatty tissue overgrowth
- Vascular malformations causing swelling or pain
- Skin lesions like epidermal nevi
- Skeletal deformities such as scoliosis

If you or someone you know shows these symptoms, consult a specialist promptly.

Together, we can make a difference!

#CLOVESSyndrome #RareDiseaseAwareness #CongenitalDisorders #VascularMalformations #OvergrowthDisorders #GeneticDisorders #RareDiseaseSupport #HealthcareAwareness #MultidisciplinaryCare #SCABPharmacy

🕵️‍♀️ Dark secrets. Rare diseases. One podcast unearths everything. 🎙️
🎧 Nobody Should Believe Me Season 6 — truth hits harder than fiction!

https://thepodcasting.org/nobody-should-believe-me-podcast-season-6-reveals-hidden-family-crimes-in-rare-disease-community/

#TrueCrime #RareDiseaseAwareness #PodcastRecommendations #MustListen #TrendingNow #CrimePodcast #RealStory #PodcastSeason6

PKU and being 'hangry'. Satiety (feeling full) can be a problem for those with PKU. Here are a few tips for those following a low-protein diet.

https://www.pigpen.page/pku-and-being-hangry/

#LivingWithPKU #PKU #PCU #Phenylketonuria #RareDisease #PKUFood #RareDiseaseAwareness #Hanger #Hungry

𝗕𝗼𝗵𝗿𝗶𝗻𝗴-𝗢𝗽𝗶𝘁𝘇 𝗦𝘆𝗻𝗱𝗿𝗼𝗺𝗲 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗗𝗮𝘆 🌟

Today, April 6th, marks an important milestone as we celebrate Bohring-Opitz Syndrome Awareness Day, honoring the journey of families affected by this rare genetic condition. Ten years ago, on this day in 2011, the first support group was formed on Facebook, creating a platform for parents and caregivers to connect, share experiences, and provide support.

𝗪𝗵𝘆 𝗚𝗼𝗹𝗱 & 𝗗𝗲𝗻𝗶𝗺?

- Gold represents the love and brilliance of our children, who are precious and bring light into our lives. Many children with Bohring-Opitz Syndrome are drawn to shiny objects, making gold a fitting symbol.
- Denim signifies the awareness of rare and genetic diseases. Blue denim is recognized as the color for these conditions, fostering unity among families facing similar challenges.

This year, we want to encourage everyone to learn more about Bohring-Opitz Syndrome and support the families navigating this journey. Together, we can make a difference!

Join us in raising awareness by sharing this post.

#BOSAwarenessDay #BohringOpitzSyndrome #RareDiseaseAwareness #SupportFamilies #GoldAndDenim #GeneticConditions #BOSFoundation #CommunitySupport #HopeForBOS #SCABPharmacy

Let’s continue to spread awareness and support one another! 🌈