Movement Disorders Policy Coalition @movedisorders
MDPC brings together advocacy groups, health care providers & patients to inform policy impacting patient-centered care for people with movement disorders. movementdisorderspolicy.org Washington, DC Joined August 2017-
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Treatments for Parkinson's disease are useful only if patients can access them. This is why addressing barriers to access is important. Learn more in a new policy paper from @movedisorders ▶️ bit.ly/49sXlGs
#DYK? Patients with Parkinson’s experience the disease differently, based on genetics, age of onset, disease stage and symptoms. This #ParkinsonsAwareness Month, learn more in @movedisorders' paper: bit.ly/3Otm1qe
Parkinson's symptoms can vary for every person. Learn how a patient-centered approach can help patients manage their condition this #ParkinsonsAwarenessMonth ▶️ bit.ly/3w1cgqG
What do you know about Parkinson's disease and its symptoms? Learn more this #ParkinsonsAwarenessMonth ▶️ bit.ly/3Otm1qe
As more insurers and employees implement copay accumulator adjustment programs, patients can face serious consequences, including medication abandonment, financial hardship and non-medical switching. Learn more ▶️ bit.ly/301V3f8
Parkinson's disease is a complex, progressive condition with a wide range of symptoms. There are treatment options available, but only if patients can overcome insurance barriers and have equitable access. Learn more this #ParkinsonsAwarenessMonth ▶️ bit.ly/3w0m29o
Can you recognize the symptoms of #dystonia? Learn more ▶️ bit.ly/3us5qvG
About 90% of Parkinson's patients experience "off" periods, when symptoms re-emerge despite medication. Learn how new treatment could bring new hope to these patients this #ParkinsonsAwarenessMonth ▶️ bit.ly/2yO595M
Approximately 1 million people across the United States live with Parkinson’s disease. Given its various symptoms, tailored treatments can help those affected, but only if health plans make them accessible. Learn more this #ParkinsonsAwarenessMonth: bit.ly/3Lerw90
Has your insurer refused to cover a movement disorder treatment or therapy prescribed by your health care provider? Learn about what you can do ▶️ bit.ly/3RaBbSX
DYK? The number of people with Parkinson’s disease is expected to double by 2040. Learn more this #ParkinsonsAwarenessMonth ▶️ bit.ly/3BCRTCd
DYK? An estimated 200,000 people are at risk of inheriting Huntington’s disease. Learn more: bit.ly/3KjAliJ
People with Parkinson’s are at risk for social isolation due to their limited mobility, making it difficult to get involved in activities. However, lack of social engagement will only worsen the symptoms. Learn more this #ParkinsonsAwarenessMonth ▶️ bit.ly/3BCRTCd
Prior authorization was once only mandatory for expensive medicines, but now some insurers require it for routine tests and treatment, which burdens clinicians and undermines patient-centered care. Learn more ▶️ bit.ly/2T00h8H
Anxiety is common among people with #Parkinsons disease and contributes to a worse life quality for patients irrespective of motor symptom severity, according to a new German study. This #ParkinsonsAwareness Month, read more in @parkinsonstory's article: parkinsonsnewstoday.com/news/anxiety-c…
April is #ParkinsonsAwarenessMonth 🌷 This month is an opportunity to bring awareness about Parkinson's disease and its symptoms, to educate others, improve treatment and work toward finding a cure. Learn more ▶️ bit.ly/3Otm1qe
Do you know what happens when health plans push movement disorder patients off their current botulinum neurotoxin to one that's less expensive for the insurer? Learn the consequences of non-medical switching here ▶️ bit.ly/43pCsdj
DYK? Incorporating telemedicine can help ease movement disorders patients and their caregivers by discussing progress and monitoring symptoms virtually. Learn more ▶️ bit.ly/3n0oj0j
Movement disorders cause motor symptoms that are easy to see, but many people also experience mental health conditions that are not as obvious. Learn more ▶️ bit.ly/339zOb9
DYK? Seniors are hard hit financially by movement disorders because these conditions often present late in life and can worsen over time. Learn more ▶️ bit.ly/3evBIsQ
IETF @essentialtremor
2K Followers 255 Following The IETF empowers individuals with essential tremor to regain control of their lives: raising awareness, funding research and offering hope & support. Join us!
Mental Health America @MentalHealthAm
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UMN Movement Disorder.. @UMNmvmtdisorder
67 Followers 69 Following University of Minnesota Movement Disorders Fellowship
Annie Starkey @AnnieStarkey
37 Followers 288 Following
Dayesha Sims @DayeshaSims
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MOVAN-Fleni @movanfleni
733 Followers 985 Following Movement Disorders Center - Grupo de Movimientos Anormales de Fleni
MaryBeth Lee (Arcidia.. @MBArcidiacono
929 Followers 4K Following Mother. Clinical Social Worker. Consultant. Educator. Advocate. Grief. Trauma/Traumatic Loss. Post-Traumatic Growth. TBI. Mental Health. Social Justice.
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Abdulmunaim Eid @AbdulmunaimEid
398 Followers 882 Following Movement Neurology Fellow at Washington University in St. Louis studying the neurobiology of degenerative parkinsonism.
UMiami Movement Disor.. @UMiamiMoveDis
159 Followers 199 Following University of Miami Movement Disorders Division | Parkinson’s Center of Excellence | Huntington's Disease Center of Excellence | Tourette's Center of Excellence
Doctor Chefi Ben Chao.. @chefi_ben
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Scott @farmersBTC
52 Followers 235 Following Family man, advocate for people with pain conditions, love art, sports, and outdoors.
Credit For Caring �.. @creditforcaring
2K Followers 5K Following Social worker and Health Info Tech Founder Certified Women Owned business 👩🏫 Caregiver tax credit Social Determinants of Health 24/7 online access 🌝🌔
Prof. Sigrun Lange, F.. @PADs_CNS
679 Followers 631 Following Professor of Molecular Pathobiology; researching PADs, Citrullination & EVs in Health, Disease, Tissue remodelling, CNS, Regeneration, Ontogeny, Phylogeny
CaseyRosso M.D. @CaseyRossoMD
378 Followers 2K Following M.D. BSc.(Hons) Neuroscience. DPhil(PhD)Neuroscience Student @uniofoxford Functional Neurosurgery Group @NDSurgicalSci Nuffield Department of Surgical Sciences.
Detroit,MI @laracroftness
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🇺🇦Evan Kirstel .. @EvanKirstel
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IETF @essentialtremor
2K Followers 255 Following The IETF empowers individuals with essential tremor to regain control of their lives: raising awareness, funding research and offering hope & support. Join us!
Michael Okun @MichaelOkun
33K Followers 858 Following National Medical Advisor @parkinsondotorg Author 14 books https://t.co/EJCwDpEIw8 blog Professor @UF @fixelinstitute Associate Editor @JAMANeuro @DBSThinkTank
Mental Health America @MentalHealthAm
375K Followers 3K Following Dedicated to promoting mental health, well-being, and illness prevention. For crisis support, call/text 988 or chat https://t.co/FQJmzDrAle, or text MHA to 741741.
TouretteAssn @TouretteAssn
6K Followers 652 Following The Tourette Association of America is dedicated to making life better for all people affected by Tourette, Tic Disorders, and associated conditions.
michaeljfox.org @MichaelJFoxOrg
101K Followers 2K Following The Michael J. Fox Foundation is dedicated to finding better treatments and, ultimately, a cure for Parkinson’s disease. Social Info: https://t.co/jN2BqHCali
ScienceofParkinsons @ScienceofPD
10K Followers 266 Following Personal account of the Director of Research at @CureParkinsonsT - All views my own - Kiwi - Kia kaha - 侘寂
Aimed Alliance @aimedalliance
720 Followers 927 Following Aimed Alliance is a 501 (c)(3) not-for-profit health policy organization that protects and enhances the rights of health care consumers and professionals.
Generics Access Proje.. @GenericsProject
330 Followers 37 Following Advocating for policies that promote generic competition and efficient approval of generic medicines.
Parkinson & Movement .. @PMDAlliance
2K Followers 459 Following PMD Alliance provides opportunities for people impacted by PD, HD and other movement disorders to learn, live, and connect.
Patient & Provider Ad.. @telehealthadv
364 Followers 36 Following Patient & Provider Advocates for Telehealth advances policies that ensure robust coverage and minimal access obstacles for those who rely upon telehealth.
Tics and Tourette Acr.. @TTAGpatients
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National Organization.. @NationalTardive
177 Followers 78 Following National Organization for Tardive Dyskinesia (NOTD) is the first and only national organization in the U.S. dedicated to those afflicted by tardive dyskinesia.
The American Brain Co.. @AmericanBrainCo
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407 Followers 210 Following CNSA is an organization of clinical & academic neurologists dedicated to neurology & the neurosciences.
Dr.KDBarton @DrKBarton
607 Followers 695 Following Mom. Emergency Medicine and wound care physician. Advocating for patients and physicians trapped in the healthcare quagmire
Part D Access @PartDAccess
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Center for Neuromodul.. @MtSinaiNeuromod
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Please follow @Parkin.. @PDFparkinson
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Did your insurance provider deny coverage for a prescribed treatment or therapy for your movement disorder? Learn about your rights and steps to take action ▶️ bit.ly/3RaBbSX
Check out this new podcast provided by @movedisorders #ABrainCoProud #TD
In AfPA's Patient Access Podcast, Kathleen Shea, MA, MPH, explains how her experience with tardive dyskinesia motivated her to create an organization to support other patients with #TD. Listen here ▶️ apple.co/3xZNcPH
DYK? Approximately 10 million Americans live with essential tremor. Learn more about essential tremor from CNSA's coalition partner @movedisorders ▶️ bit.ly/3HNAEAL
March is National Essential Tremor Awareness Month. Learn about comprehensive treatment options from CNSA's coalition partner @movedisorders ▶️ bit.ly/3Sqm2fv
April is Parkinson's Disease Awareness Month. Patients living with Parkinson's deserve timely access to care. Learn more about addressing barriers in this policy paper from @movedisorders ▶️ bit.ly/3SjMeZj
Treatments for Parkinson's disease are useful only if patients can access them. This is why addressing barriers to access is important. Learn more in a new policy paper from @movedisorders ▶️ bit.ly/49sXlGs
#DYK? Patients with Parkinson’s experience the disease differently, based on genetics, age of onset, disease stage and symptoms. This #ParkinsonsAwareness Month, learn more in @movedisorders' paper: bit.ly/3Otm1qe
A13: Resources: @NIMHgov, @movedisorders, @NationalTardive, @neurocrine, @RareDiseases, @patientaccess, @CaregiverAction, @MentalHealthAm #TDAwarenessWeek
Q13: Where can people who want to learn more about TD go for more information and to find support? #TDAwarenessWeek
Thank you @MentalHealthAm,@CaregiverAction and @movedisorders for helping to raise awareness about #TD during #TDAwarenessWeek. Get involved using @movedisorder’s #TDAwarenessWeek toolkit: bit.ly/2Yo4Dd3
That concludes our chat! Thank you to everyone that joined today’s discussion. Make sure to follow @MentalHealthAm, @patientaccess, @CaregiverAction, @movedisorders, and @neurocrine to continue to learn and stay engaged.
@movedisorders The American Academy of Neurology's (AAN) updated treatment recommendations can be found at: tdhelp.org/treatments/ In addition, this page lists additional pharmaceutical and holistic treatments that have been studied to help control TD symptoms. #TDAwarenessWeek
A12. Family caregivers can support TD patients by learning more about the condition and helping raise awareness of tardive dyskinesia and the stigma surrounding it. #TDAwarenessWeek
Q12: How can a family caregiver help support a loved one who has TD? #TDAwarenessWeek
Q12: How can a family caregiver help support a loved one who has TD? #TDAwarenessWeek
As a family caregiver, you want to know and understand the options available to your loved one so you can support them in their treatment. #TDAwarenessWeek
A11. Treatment for TD can depend on the severity of your symptoms and how long you’ve been taking your medication. That’s why it’s important to talk to your health care provider about your options. Effective treatments are available. #TDAwarenessWeek
@MentalHealthAm One very helpful way of building community and gaining coping strategies is to join a TD support group. We offer support groups that meet every other week on Zoom. Visit: TDhelp.org to register. #TDAwarenessWeek
@MentalHealthAm A7: Make sure your loved one’s doctor knows what medications they are taking and the dosage. See our Medication Checklist to help you: caregiveraction.org/medication-che… #TDAwarenessWeek
@MentalHealthAm A7: One family caregiver has shared the difficulty of getting a diagnosis in this video. His wife had previously been diagnosed w/ schizophrenia. When the new symptoms started, they thought it was Parkinson’s. caregiveraction.org/tims-story #TDAwarenessWeek
@MentalHealthAm A6: Your loved one’s primary care physician may refer them to a psychiatrist or neurologist who has experience with TD. #TDAwarenessWeek
@MentalHealthAm TD is a chronic condition with uncontrollable body movements. It can be caused by the use of some medications used to treat mental health conditions. #TDAwarenessWeek
A4: Therapy can help individuals with TD work through the emotional impact/self-esteem issues they may be experiencing. It can also help them manage stress, which may be a trigger for some symptoms. #TDAwarenessWeek
Q4: Why is access to therapy important for those with TD? #TDAwarenessWeek
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