Ectrodactyly Ectodermal Dysplasia Cleft Lip/Palate

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Ectrodactyly Ectodermal Dysplasia Cleft Lip/Palate
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    I’m in a bar

    The bar around the corner. I’m drinking a soda, and being honest, my second beer. It’s not a problem to me, I drink tons of water.
    But today I needed a good beer.
    I was exhausted, sad and at home it was too hot.
    Here I have AC, fresh beverages, watching a new Amazon tv show, and at least, a free moment, which I don’t have at home. Why? Well I know about neighbors noise. What more? Power in Spain in the most high expensive price in EEC. And I have people around . Ok I wear my noise cancelling earplugs.
    I feel free for a moment and I needed it badly.
    Have you all a happy Thursday 😃💕🎧🙏🏻
    #CPTSD
    #CFS
    #Anxiety
    #Depression

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    Capitol Crawl Commemorative Rally #CCCRally

    On March 12, 1990, 475 people went to the #Capitol to protest for more rights for disabled. 60 of these brave people set aside the walkers, canes, crutches and wheelchairs to crawl up the Capitol steps. This widely became known as the "Capitol Crawl". Their determination and bravery led to the passing of the Americans with Disabilities Act. We return to the Capitol for additional #medicalfreedom and #qualityoflife

    ❓Why join us❓30 years after those selfless people fought for ADA laws, the rights of all patients, regardless of disease, ability, mobility, age, gender, race, religion, or veteran status has been infringed upon and crossed. Patients being denied access to treatment, therapies, #medications, #mobilityaides , #ServiceDogs, and a basic #quality of life.

    👩‍🦼👩‍🦯👩‍🦽Who: any and all patients with rare disease, #ChronicIllness, #Disease, and recently diagnosed disease. All #Caregivers , #Family members, #Friends, spouses and significant others. All #HealthcareProviders , nurse's, researchers, #therapists , and all other people serving any patient.👩‍⚕️👩‍🏫🕵️

    Goals:
    🦾1. To show #legislators and governing bodies that ALL patient groups are suffering.
    🦾2. To show we are serious about the impact legislative restrictions have had on patients, whether this be at the research level, funding issues, medication approval stage, or insurance approval problems.
    🦾3. To show each other support, kindness, and love.
    🦾4. To validate one another's tribulations and become refreshed with a sense of purpose.
    🦾5. To unify in the direction that a person's medical care is between that person and their provider, whether they be an MD, a DO, a PA, a NP, nurse, physical therapist, massueist, chiropractor, accupuncturist, or any other amazing human that breathes life into our diseased bodies.

    Yes, we are working on accessible ground transportation, and lodging.

    Yes, there are opportunities to some financial travel assistance.

    Yes, there will be guest speakers. Prepared to be inspired!!

    Yes, we will work our tooshies off to accommodate every attendee's needs.
    #Ehlers -danlos #EhlersDanlosSociety #CRPS #ComplexRegionalPainSyndrome #Fibromyalgia #Fibromyalgia #ChronicPain #Chronicpainwarrior #warrior #LymeDisease #rallyingcry #MultipleSclerosis #Undifferentiatedpleomorphicsarcoma #Cancer #AlzheimersDisease #DiabetesType2 #DiabeticNeuropathy #DiabetesType1 #CongenitalHeartDefectDisease #RareDisease #RheumatoidArthritis #AutonomicDysfunction #Dysautonomia #LivingWithPOTS #BipolarDepression #AdhesiveArachnoiditis #PosturalOrthostaticTachycardiaSyndrome #Lymphedema #IdiopathicThrombocytopenicPurpuraITP #PolycysticOvarySyndrome #Adenomyosis #Endometriosis #BipolarDepression #EctrodactylyEctodermalDysplasiaCleftLipPalate #AdrenalInsufficiency #AutoimmuneImmunodeficiency #ChronicFatigueImmuneDeficiencyDisorder #MyalgicEncephalomyelitis #DependentPersonalityDisorder #Aspergers #Autism #OsteogenesisImperfecta #GastroesophagealRefluxDisease #Insomnia

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