Patient Worthy Memes

On October 1, the General Health Council in Mexico

On October 1, the General Health Council in Mexico began the first National Census of Patients with Rare Diseases.

This census will last until January 15, 2022. Through this, Mexico hopes to create a full public national registry of rare diseases and improve patient outcomes through neonatal screening, early diagnosis, treatment, and more.

*LINK IN BIO for full story*
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#patientworthy #mexico #medicalnews #raredisease #rarediseases #patientregistry #rarediseaseawareness #gaucherdisease #histiocytosis #mpsii #homocystinuria #turnersyndrome #cysticfibrosis #phenylketonuria #patientadvocacy #newbornscreening #geneticdisorders #geneticcounseling

Today is the 3rd annual Niemann-Pick Disease Aware

Today is the 3rd annual Niemann-Pick Disease Awareness Day.

Norman-Pick disease consists of three subtypes (A, B, and C). These rare genetic metabolic disorders are characterized by the accumulation of toxic materials within the body’s cells. In addition to having an enlarged liver or spleen, patients may experience speech, swallowing, and feeding difficulties, as well as cognitive impairment.

Niemann-Pick disease is highly variable; patients and their families all experience highly different symptoms and progressions. Recently, I have had the chance to speak with two separate mothers whose daughters have adult-onset NPC; I will soon speak with some more NPC mamas about their experience. When they speak to me, I can feel how important it is to share these stories and raise awareness.

Today’s #NiemannPick Awareness Day highlights the global effort to further research, develop treatments (and make existing ones more accessible), and share the stories of those impacted.

How are you raising awareness?
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#patientworthy #niemannpickdisease #niemannpicktypec #niemannpickc #raredisease #niemannpickdiseaseawareness #niemannpickawareness #nnpdf #nationalniemannpickdiseasefoundationinc #raremoms #raremom #geneticdisorder #geneticdisease #genetics #rarediseaseadvocacy #patientadvocacy #rarediseaseawareness #sphingomyelin #niemannpicktypea #metabolicdisorder

From our friends at @mission_cure: “We all know

From our friends at @mission_cure:

“We all know that pain is the #pancreatitis symptom that most impacts patients’ lives. Patients use several strategies, often in combination, to address pancreatitis pain. Eric Golden, co-founder of Mission: Cure and pancreatitis warrior, uses #meditation, along with medications, to help manage his pain.

Join us on October 28th at 2pm for a conversation between Eric and the meditation teacher who helped him, Dr. Christiane Wolf. The webinar will cover how to use meditation, #mindfulness, and self-compassion to live with chronic pancreatitis pain.”

Head to @mission_cure to learn more about registration!
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#patientworthy #missioncure #chronicpancreatitis #chronicpancreatitiswarrior #pancreatitisawareness #chronicpain #chronicpainawareness #chronicpainwarrior #chronicpainlife

Recently, #patientadvocate Neil Smith submitted hi

Recently, #patientadvocate Neil Smith submitted his story to Patient Worthy discussing his experience with Kallmann syndrome (KS). Also known as congenital hypogonadotropic hypogonadism, KS is a rare genetic disorder characterized by a lack of — or delay in — puberty.

Head to the PW website to read Neil’s story and learn how he now advocates for this community!

Thank you for submitting, Neil.
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#patientworthy #patientstory #patientadvocacy #patientappreciation #kallmannsyndrome #puberty #absentpuberty #hormonespecialist #hormones #geneticdisorder #geneticdisease #raredisease #congenitalhypogonadotropichypogonadism #amplifypatientvoice #endocrinology #endocrinologist

Did you know that October is #SpinaBifidaAwareness

Did you know that October is #SpinaBifidaAwarenessMonth?!

This is a great time to raise awareness around #spinabifida and celebrate the unique and diverse community.

If you’re looking for ways to raise awareness, there are many! You can wear teal (especially on October 25), contact your local media, share your stories on social media, and more. @spinabifidaassn offers 10 great avenues to get involved — some of which we’ve written about (Link in Bio!!).

How are YOU raising awareness for spina bifida?
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#patientworthy #SBAM2021 #spinabifidaawareness #spinabifidastrong #spinabifidawarrior #spinabifidababy #spinabifidafighter #spinabifidamom #myelomeningocele #spinabifidaocculta #raremom #rareis #neuraltubedefects #birthdefect #birthdefects #neuraltubedefect #spinabifidaassociation #spinabifidaadult #patientadvocacy #patientadvocate

Patient Worthy is proud to be a media partner to t

Patient Worthy is proud to be a media partner to the annual @nord_rare Rare Diseases & Orphan Products Breakthrough Summit (#NORDsummit), happening virtually October 18-19.

This event is one of the largest multi-stakeholder events in the #raredisease world, connecting rare disease leaders and patient advocates with industry experts for 2 days of sessions and networking opportunities.

This amazing summit will explore critical topics affecting millions of people impacted by rare disease in this new era of #publichealth awareness. Join in to discuss research, patient advocacy, #genetictesting, and more.

That’s right, you can still register! Just copy this link into your browser or send a DM for more info: bit.ly/3BoJmA9
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#patientworthy #nationalorganizationforraredisorders #NORD #rarediseasetruth #rarediseases #rarediseaseday #gaucher #hemophilia #raremom #rareis #geneticdisorder #geneticdisease #krabbedisease #fragilex #chronicillness #patientsarenotfaking #patientshelpingpatients #patientadvocate #patientadvocacy #mitochondrialdisease #raredisorder #narcolepsyawareness #medicalresearch #clinicaltrial #myelofibrosis #scleroderma

From October 7-11, the @nsda_sd held its 2nd annua

From October 7-11, the @nsda_sd held its 2nd annual #WalkforTalk fundraiser to raise awareness around, and funds for, #spasmodicdysphonia.

During the walk, the NSDA featured a song called “I Have a Voice,” created by @msslideguitar with help from songwriter @graceaskew.

🎶 Link in bio — head to our website to learn more about spasmodic dysphonia and Wendy’s story, and take a listen to “I Have a Voice” on the @nsda_sd website! 🎶
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#music #fundraiser #patientworthy #spasmodicdysphoniaawareness #spasmodic #slideguitar #ihaveavoice #nationalspasmodicdysphoniaassociation #voicedisorder #voicedisorders #voicedisorderawareness #neurology #neurologicaldisorder #larynx #adductorspasmodicdysphonia #abductorspasmodicdysphonia #raredisorder #raredisease #nord #dysphonia

Coming up on October 27 — learn more about #gene

Coming up on October 27 — learn more about #genetictesting for leukodystrophies, and get an introduction to the science behind #genetherapy, with the United Leukodystrophy Foundation Live Webinar Series!

Presented by Rachel Logan, MMSc, a #geneticcounselor!

The session will be recorded and posted to the @ulfunited YouTube channel on October 28.

If you are interested in registering, head to @ulfunited to learn more.
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#webinar #patientworthy #unitedleukodystrophyfoundation #leukodystrophy #leukodystrophyawareness #genetics #geneticcounseling #geneticcondition #geneticengineering #genetherapyresearch #crispr #inheriteddisease #canavandisease #adrenoleukodystrophy #alexanderdisease #raredisease #raremom #krabbedisease #metachromaticleukodystrophy #cerebrotendinousxanthomatosis #refsumdisease

In 2019, a man went to the hospital in Hokkaido, J

In 2019, a man went to the hospital in Hokkaido, Japan. He had been bitten by a tick and was experiencing fever and leg pain — but all of the tests showed that it wasn’t a regional tick-borne illness. One year later, another patient presented with the same symptoms — and an illness which didn’t show up on tests.

Since then, researchers have discovered the #Yezovirus, a novel #orthonairovirus. At least 7 patients have been infected, according to a 7-year blood sample analysis. Symptoms include fever, leg pain, abnormal liver function, #thrombocytopenia, and low #leukocyte levels.

At least 3 tick species were found to carry the virus, which may have been transmitted from raccoons and Hokkaido shika deer. It is similar to the #sulinavirus of Romania or the #tandyvirus of Uzbekistan.

Although Yezo virus does not seem to be deadly, researchers are unsure how far it has spread outside of Hokkaido.

*Link in bio to learn more!*
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#patientworthy #tickbornediseases #tickborneillness #tickbornedisease #tickbite #hokkaido #medicalresearch #medicalnews #infectiousdisease #infectiousdiseases #infectiousdiseasecontrol #raredisease #rarevirus #epidemiology #geneticvirus #rarediseasefacts

October is #DysautonomiaAwarenessMonth! To help

October is #DysautonomiaAwarenessMonth!

To help spread awareness, @dinetorg is putting on an exciting speaker series with top physicians in the #dysautonomia community. This series is for everyone — patients and caregivers, students and medical professionals — with a goal of spreading education and awareness around “invisible” chronic illnesses.

On Tuesday, October 11, check out “Get in the Know: An Overview of #POTS Today,” with Dr. Amer Suleman of @ut_dallas from 1-2pm EST.

On October 19, join in on “COVID-19 and Dysautonomia: What is Known and What is Not” with Dr. Shetland Blitshteyn of @jacobs_med_ub.

October 26 brings “Let’s Talk POTS: How to Identify and Manage POTS” with Dr. Satish Raj of @libininstitute.

Finally, November 2 brings a round table discussion with patient representatives and professionals on “Collaborating for Better Patient Outcomes.”

All talks in the #DINETdyscussions speaker series will premier LIVE on @dinetorg’s YouTube channel! We hope to see you there.
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#patientworthy #dysautonomiaawareness #dysautonomiawarrior #potssyndrome #potsawareness #chronicillness #invisibleillness #invisibleillnessawareness #invisibleillnesses #chronicillnessawareness #speakerseries #medicalnews #medicalresearch #patientadvocacy #patientadvocate #dinet #posturalorthostatictachycardiasyndrome #autonomicnervoussystem #autonomicdysfunction #neurocardiogenicsyncope

Today is the 3rd annual Progressive Familial Intra

Today is the 3rd annual Progressive Familial Intrahepatic Cholestasis (#PFIC) Awareness Day!

#pficawareness day works to raise awareness around PFIC, its impact, and the research and advocacy needed to expand our understanding of this disease.
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Progressive familial intrahepatic cholestasis causes progressive and life-threatening #liverdisease. Due to genetic mutations, those with PFIC have #cholestasis, or impaired bile flow. As bile accumulates, it causes changes in organ function, intense itching called #pruritus, and other symptoms such as jaundice, failure to thrive, easy bruising and bleeding, abdominal swelling, dark urine and pale stools, and vitamin deficiencies.

Most people with PFIC begin showing symptoms in early childhood, often before age 2. However, some patients were diagnosed into adolescence. PFIC can cause cirrhosis and liver failure by age 10, with many requiring treatment before age 30.

To learn more about PFIC and how you can spread education during #PFICAwarenessDay 2021, head to @pficnetwork!
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#progressivefamilialintrahepaticcholestasis #cholestasisawareness #stoptheitch #rarebutmighty #raredisease #rarediseases #rarediseaseawareness #raremom #liverdiseaseawareness #genetics #geneticmutation #geneticdisorder #geneticdisease #patientadvocate #patientadvocacy #patientworthy #pficnetwork #medicalresearch #liver #liverhealth

Today, October 1, is International Gaucher Day. Th

Today, October 1, is International Gaucher Day. This day raises awareness for #gaucherdisease, a rare lysosomal storage disorder.

The @igagaucher explains that the focus of this year’s #IGD2021 is to improve patients’ quality of life by campaigning for the Allier diagnosis of Gaucher disease. “Early diagnosis, better lives.”
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GBA gene mutations cause #gaucher disease — and these genes are inherited in an autosomal recessive pattern (meaning people must inherit one defective gene from each parent).

These mutations cause low or non-existent beta-glucocerebrosidase activity, allowing a type of lipid to build up in cells and damage tissues.
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Early diagnosis is crucial to improving patient outcomes and giving every person and family touched by Gaucher disease the opportunity for a better future.

How are you raising awareness?

To learn more about Gaucher disease, or International Gaucher Day, head to our website or check out the amazing resources from @igagaucher!
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#patientworthy #raredisease #rarebutnotalone #earlydiagnosis #earlydiagnosissaveslives #internationalgaucherday #gaucheralliance #earlydiagnosisbetterlives #rarediseasetruth #rarediseaseawareness #rareis #raremom #genetics #geneticcounseling #geneticdisorder #lysosomalstoragedisorder

Just dropped: an interview with Elsa Burgos, whose

Just dropped: an interview with Elsa Burgos, whose daughter Nicole was diagnosed with adult-onset #niemannpicktypec at age 27.

Growing up, Nicole displayed little - if any - signs of having #NiemannPickC. She was somewhat clumsy (“I figured she got that from me,” Elsa chuckled) and experienced some difficulties in college, but nothing overly concerning.

In her mid-20s, Nicole began displaying neurological symptoms which doctors initially misdiagnosed as schizophrenia, bipolar disorder, and NMDA encephalitis.

But through rapid #genetictesting, the family finally received the diagnosis: Niemann-Pick disease type C.

Since then, Elsa spoke about how Nicole has made strides on #arimoclomol, though the FDA did not approve this drug in June as expected. Now, what does the future hold for families with NPC? What will happen to their children?

“We’ve been lucky to have her for this long, but we don’t know how much longer we’ll have that chance.”
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Head to our website to read Elsa’s powerful - and sometimes tear-jerking - story of what it means to be a #rarediseasemom and an advocate. Further, learn how YOU can get involved to spread awareness and support families with #NPC.
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#patientworthy #patientsarenotfaking #patientstory #niemannpick #raredisease #raremom #raremamas #genetics #geneticdisorder #geneticdisease #metabolicdisorder #nord #rarediseaselife #rareis #rarediseases #rarediseaseawareness #npcawareness #genetictest #dontgiveuponnpc #saveourmedicines #saveourmedicine #miglustat #motherhood #findyourrare

For today’s #TuesdayTips, I want to talk to you

For today’s #TuesdayTips, I want to talk to you about a question we’ve heard time and time again: how can patients with #phenylketonuria and other metabolic disorders effectively exercise and build muscle?

If you’re getting started in #bodybuilding, weightlifting, or just exercising more, the common piece of advice is: “eat more protein.” But for those with metabolic disorders who cannot properly break down protein, extremely low-protein diets require (sometimes) under 6g daily. So how can you build muscle mass?

Using tips from @national_pku_alliance, patients, metabolic dietitians, and more, we created a list of tips to help those with metabolic disorders enter into this arena. In particular, we hope these tips are helpful for those with #PKU, #ureacycledisorder, and #homocystinuria.
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🏋️‍♀️TIPS🏋️‍♀️

• Losing weight too quickly can raise phenylalanine levels. Focus on slower, deliberate goals to develop lean muscle mass.

• The @national_pku_alliance suggests that adults with PKU should engage in 150 minutes of moderate aerobic activity OR 75 minutes of vigorous physical activity each week, alongside 2 days of muscle strengthening and balancing exercises.

• Alternately, children with PKU should exercise for 60 minutes daily, alongside 3 days a week of vigorous activity and muscle and bone strengthening exercises.

• Leverage the help of a #dietitian who can help you create a nutritional plan.

• Drink formulas like RESTORE, BetterMilk, and Aminogran which provide protein without phenylanine.

• Stay hydrated!!

• Don’t maintain a caloric deficit as it can raise phenylalanine levels.
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To read the full article, as well as to find all citations and links used to find this information, head to Patientworthy.com and search “A Guide to Bodybuilding with PKU and Other Metabolic Conditions.”
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#hcu #homocystinuriaawareness #homocysteine #raredisease #raredisorder #patientworthy #phenylketonurie #phenylketonuriaawareness #pkuawareness #pku #ureacycledisorders #metabolicdisorder #arginasedeficiency #ornithinetranscarbamylasedeficiency #genetics #geneticdisorder #bodybuildinglifestyle #bodybuildingtips #lowprotein #lowproteindiet #npkua #nationalpkualliance

Today we’re combining #FridayFacts with our #Rar

Today we’re combining #FridayFacts with our #RareClassroom series, which is designed for the curious readers who want to deepen their understanding of rare and underserved conditions.

Today’s topic? #15q24 Microdeletion Syndrome. 🧬

#15q24microdeletion Syndrome may also be called del(15)(q24) or #monosomy 15q24.

This rare chromosomal abnormality occurs when a 1.7-6.2 Mb deletion affects chromosome 15q24, leading to a range of symptoms. Only a handful of patients have received official diagnosis.

Symptoms include mild to moderate intellectual disability, developmental delays, failure to thrive, feeding difficulties, delayed speech development, behavioral abnormalities, and low muscle tone.

Although so few cases have been diagnosed, researchers believe the prevalence may be even higher.

To better support patients and their families, raising awareness around this condition - and other rare conditions - is crucial!

To learn more about 15q24 Microdeletion Syndrome, head to our website!
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#patientworthy #raredisease #rarediseases #chromosome #chromosomes #medicalresearch #chromosomedisorder #monosomy15q24 #raremom #genetics #raresyndrome #education #medicalnews #medicalnotes #genomics #chromosomalabnormality #failuretothrive #developmentaldelay

How has #covid19 changed the way the medical field

How has #covid19 changed the way the medical field operates? Unfortunately, in this time, the ability to receive an #organtransplant has fallen heavily. The intensive care unit (ICU) is vitally important for transplant surgeries. However, due to a lack of room in ICUs, the number of organ transplant procedures has fallen 20% over the past year.

How can we best support patients who need an organ transplant?

To ponder this question, and learn more about organ transplantation, take a look at a new article today on #PatientWorthy: “Organ Transplants Face Unprecedented Issues in the Age of COVID” by Alyssa Stevens.
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If you are a patient who needed an organ transplant or required follow-up after an organ transplant, what issues have you faced over the past year and a half?
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#medicalxpress #medicalnews #medicalresearch #organtransplantstory #organtransplantation #organtransplantrecipient #icunurse #icu #hearttransplant #hearttransplantsurvivor #hearttransplantrecipient #kidneytransplant #kidneytransplantrecipient #kidneytransplantsurvivor #kidneytransplantation #lungtransplant #livertransplant #livertransplantsurvivor #livertransplantrecipient #newarticle #raredisease #pandemic

Patient Worthy will have a virtual booth at @camra

Patient Worthy will have a virtual booth at @camraredisease #raresummit21! Come join 300 of the greatest minds in #raredisease to exchange ideas, make connections, and debate possibilities. This event takes place on Thursday, October 7, from 4am-12pm EDT. However, all information will be available for attendees for at least 30 days following!

Interested in registering or learning more? Check out the @camraredisease website!
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#rarediseaseresearch #rarediseasemom #rarediseases

My-o-myositis! That’s right. Today, September 21

My-o-myositis! That’s right. Today, September 21, is Myositis Awareness Day. So what is #myositis? Myositis is considered the inflammation (swelling) of the muscles. While many people experience some muscle discomfort or swelling after vigorous exercise, injury, or infection, myositis specifically refers to CHRONIC muscle inflammation. Typically, myositis and inflammatory myopathies are considered #autoimmune diseases, according to @themyositisassociation.

There are multiple forms of myositis, such as #polymyositis, #dermatomyositis, juvenile myositis, and sporadic inclusion body myositis (#sIBM). sIBM most often affects men and those over age 50. It tends to be more slower progressing than other forms, with symptoms include difficulty walking, frequent falls, foot drop, quadricep and forearm muscle weakness, muscle pain or discomfort, and difficulty rising from a chair.

Dermatomyositis often affects women more than men, especially Black women. Symptoms include scaly or dry skin; fatigue and general malaise; difficulty rising from a seated position; muscle weakness; difficulty swallowing; a rash (often on the eyelids, cheeks, back, and upper chest); and calcinosis under the skin. Patients with juvenile myositis, affecting those under 18, often also experience a rash.

While polymyositis is characterized by muscle inflammation and weakness, it does NOT present in a rash.

Currently, there is no cure for myositis. However, treatment can focus on symptoms. Treatments include corticosteroids, heat therapy, assistive devices, exercise, and #physicaltherapy.

Head to Patientworthy.com for more information on myositis, as well as @themyositisassociation for more resources and self-care practices.
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#myositisawarenessday #myositisawareness #myositisassociation #selfcare #raredisease #rarediseases #autoimmunewarrior #myositislife #polymyositisawareness #dermatomyositisfighter #autoimmunedisease #autoimmunewellness

It’s #TipTuesday and today I want to talk about

It’s #TipTuesday and today I want to talk about #selfcare — something we should all do but might not do enough. But self-care is important, especially within the rare disease and chronic illness community. It can help reduce your stress (and the stress on your body), improve concentration, and raise your mood.
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Here are a few self-care techniques to kickstart your day. First — listen to your body!! You are the expert on your body. Take rest when you need it. Don’t push yourself. You will get done what you need to get done, but allow yourself the strength and rest to do that. Feed yourself when you are hungry. Drink water. Exercise when you can, but let your body tell you what it needs.

When you can, try to move a bit every day. Consistent exercise can not only improve your health but your mood. Studies have shown that physical fitness helps patients with #breastcancer finish more chemotherapy sessions, or that #exercise shows benefits for patients with #charcotmarietooth disease, #pulmonaryhypertension, #multiplesclerosis, and more. Take a look at our website for a variety of exercise for all.

Try meditation to center your body and mind. Breathe deeply. Remember, you are allowed to breathe. Allowed to take a step back. Allowed to think, being happy, be upset. You are allowed to feel how you feel. If you’re having trouble centering your thoughts while meditating, you can also try journaling!

Finally, find community. Whether that is your friends and family, or the #raredisease community on social media, find others you can talk to. Tell your story and listen to others. It can be comforting to know that you are not alone.
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What are your self-care tips?
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#patientworthy #rarediseases #raremom #rareis #rarediseaseadvocacy #selfcarethread #selfcaretips #chronicillness #listentoyourbody #chronicpain #chronicfatigue #meditation #biliaryatresia #rarediseasemom #autoimmunedisease

Today is Microvillus Inclusion Disease (#MVID) Awa

Today is Microvillus Inclusion Disease (#MVID) Awareness Day! While it was first voted as an awareness day in New York state a few years back, we wanted to take today to fill you in on some facts about MVID.

MVID is a rare genetic disease of the intestine which is inherited in an autosomal recessive pattern. This means that patients must inherit one mutated gene from each parent.
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In patients with MVID, the cells within the intestine do not form correctly. As a result, the intestine cannot properly absorb nutrients and fluid. So MVID causes chronic and severe diarrhea.

Typically, symptoms appear within hours or days following birth, though it can appear as late as a few months later. Symptoms include severe, watery diarrhea; failure to thrive; poor weight gain; and dehydration.

Treatment may include TPN, supportive, or symptomatic therapies. Some recent studies have also found that certain investigational therapies may also show promise!
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#patientworthy #microvillusinclusiondisease #genetics #mvidawareness #geneticdisease #geneticdisorder #raredisease #rarediseases #rarediseaseadvocate #rarediseaseadvocate #rarediseaseresearch #medicalresearch #genetictesting #geneticcounseling

Patient Worthy has some amazing patient stories co

Patient Worthy has some amazing patient stories coming out next week, but until then - we’re here to cover some #medicalresearch.
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Recently, a team of researchers performed a systematic review and meta-analysis to understand the link between maternal #smoking and #tourettesyndrome, as well as other chronic tic disorders.

Researchers identified 641 studies related to this topic, performing an in-depth analysis of 7 studies. Altogether, researchers determined that smoking during #pregnancy increased the risk of Tourette syndrome by 35%.
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What is Tourette syndrome (also sometimes referred to as Tourette’s syndrome)? This neurodevelopmental disorder has been linked to a potential mixture of #genetics and environmental factors. Unfortunately, Tourette syndrome is often stigmatized in the media, with many portrayals of people screaming out inappropriate words. However, this is NOT a common tic, nor one that every person with Tourette syndrome experiences. Tics may include head or arm jerking; grunting; repetitive movements; nose twitching; and more. These tics are involuntary movements.
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#patientworthy #tourettes #tourettesawareness #metaanalysis #neurology #cigarettes #pregnancylife #chronicticdisorder

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