ABOUT APAN Romania NATIONAL PRESENCE: Young association, 3 years - - PowerPoint PPT Presentation

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ABOUT APAN Romania NATIONAL PRESENCE: Young association, 3 years - - PowerPoint PPT Presentation

Dec 06, 2022 7 likes •238 views

ABOUT APAN Romania NATIONAL PRESENCE: Young association, 3 years old No employees Volunteers according to the project 1...41 MS members > 250, beneficiaries > 1.000, average age 39 Advocacy - active representation in

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ABOUT APAN Romania

NATIONAL PRESENCE:

 Young association, 3 years old  No employees  Volunteers according to the project 1...41  MS members > 250, beneficiaries > 1.000, average age 39  Advocacy - active representation in national authorities: Health Ministery (MS), National Insurrance Autority (CNAS), Medicines Autorisation Autority (ANMDM/HTA), Disabilities Authority (ANPD)  Recognition (active communication): all 15 MS Centers + >57 neurologists receive newsletter. Recognised by SNR, SRNP etc.

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INTERNATIONAL PRESENCE:

  • 1. EMSP: Barometer, MS Nurse PRO, MS Paediatrics,

employeers guidance

  • 2. EFNA: 4 national TINA events, neuro awarness
  • 3. EBC: ReThinking MS study
  • 4. MSIF: Brochures translation (MS Kids, fatigue)

ABOUT APAN Romania

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APAN GENERAL OBJECTIVES AND ACTIVITIES

PROGRAMS Navigator SM #SPISM Rezistență, pace și cadență La plimbare cu SM! MONTHLY MEETINGS EVENTS national and local WORKSHOPS for neurology associations in Romania MATERIALS printed, video, blog, social media etc. BRAIN HEALTH Brain Awareness Week World Brain Day Invisible Disabilities Week MS, ALZ, PKS etc Days

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2017 10 kids + 10 parents + neuro + psiho +social MISF brochure translated in Romania 6.000EUR 2018 20 kids + 20 parents + neuro + psiho + motivational / 8.000EUR 2019 20 kids + 20 parents + neuro + psiho + motivational / > 8.000EUR

MS KIDS RETREAT

Partners: MS Center for kids in Ro + National Society of Pediatric Neurology; Sponsors: Janssen, Roche / Novartis

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2017 86 participants / May / Launch of employeers guide prototype

Partners: Centru SMile Cluj, RoNeuro, Local MS Center | Pharma sponsors: Janssen, Merck, TEVA, Sanofi/Genzyme

2018 100 participants / April / Storytelling, inspirational and motivational / 10.000EUR

Partners: Centru SMile Cluj, RoNeuro | Pharma sponsors: Biogen, Janssen, Merck, TEVA, Sanofi/Genzyme, BlueAir

2019 79 participants / April / Storytelling, inspirational and motivational / 12.500EUR (bad weather)

Partners: ASMSibiu, Astra Museum | Pharma sponsors: Novartis, Merck, Roche, TEVA, Sanofi/Genzyme

YOUNG MS PEOPLE NATIONAL CONFERENCE

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Multiple sclerosis. Multiple experience. Multiple Shine.

4 events, every 3 months, 50-60 participants/event, total > 325

  • pers. / 16 neurologists + doctors

Total budget > 21.000EUR Press articles: 24 / 5.700EUR Subjects: particularities for MS women with no kids plans, pregnancy plans, menopause, parents with kids + family in advance MS. Video materials. Stigma and perception + inspiration

WOMEN WITH MS

Partners: 4 Bucharest MS Centers (SUUElias, SUUBucuresti, SCColentina, SUMilitarCentral); Pharma sponsors: Janssen, TEVA, Merck, Roche, Sanofi/Genzyme, Henkel

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Support for new diagnostic + communication

MS NAVIGATOR

 Guidance at diagnostic (info, documentary sources, centers, doctors, organization, available tratments etc.)  Moral support  Anti stigma and inspirational examples  Blog  Communication support (family, friends, social, employers).  Human rights (disabilities, local sources etc.)

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MS NAVIGATOR: MATERIALS

PRINTED:  2 pag Tutorial MS Nurse PRO  2 pag: Pregnancy and MS  20 pag.: Employeers practical guide  36 pag.: MS Kids. Guide for parents  20 pag.: Fatigabity in MS PODCAST / RADIO: Patients stories, Radio Noro MS Kids parents guide series VIDEO: Various YouTube channel, TVs

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MS NAVIGATOR: ROSE - FATIGUE

CHARACTER: ROSE PRINTED: gaphic representation 20 pg brochure 40 patients stories VIDEO: YouTube channel video 30' Partners: MS Center SUU Elias, Reabilitation in MS; Sponsor: Merck Romania

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Psychological services support + research

#SPISM

Plans: emotional, cognitive, somatic, gender identity, couple, family, parenthal, authority, social, existential Partners: Psychos Institute, Faculty of Psychology / master, Psychologists Colegium  General presentations: 9 months, 1 seminar every month, 30-40 participants/event  Pilot project/research, preliminary testing, 2 therapy groups+ control, final testing  Big research  Psychologists best practise !!! National Health Autority (at the moment no reimbursment in Romania for psychological services

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Resistance, peace and cadence

ROSE IN ACTION: MS REHABILITATION

Partners and grants: Needed!!!

2019

 Rehabilitation incentives (swimming, kineto, fizio, dance courses etc.)  5.000 EUR/ 40 pers.

#SMove support App

 rehabilitation video exercices (dedicated FB page)  incentives after x months: abonaments, devices etc.  rehabilitation doctors anf phisicians etc.

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2016-2019:

 Beneficiars: MS patients with locomotor disabilities

  • r PPMS or pearsons in

need  Psychoterapy, kinetotherapy  1 coordinator, volunteers

PROGRAM 'LA PLIMBARE CU SM'

Volunteers support for going outside the house, parcs, malls, theaters, cinema, shopping etc.

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AWARENESS CAMPAIGNS

GENERAL BRAIN HEALTH:

  • Brain Awarness Week
  • World Brain Day
  • Invisible Disabilities Week

WMSDay 2018: #BringingUsCloser 'Thank you, doc!’, Sensory house Promenada mall, post cards FB etc. DISEASES WORLD DAYS World MS Day, Alzheimer Month and Day, Parkinson Day etc FB Calendar Storytelling, Școala Altfel !!! More than 79 press articles + more than 30 videos on YouTube

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MS AWARENESS CAMPAIGNS

‘10.000 dreams, one diagnostic: multiple sclerosis. Dreams does not stop here!’ https://www.youtube.com/watch?v=J412kK0w-YQ The #GIFT My Invisible MS campaign movie (English version!) https://www.youtube.com/watch?v=TJtDJnB1F6s&t=4s

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EFNA #TINA WORKSHOPS

BRAIN HEALTH ADVOCACY TRAININGS

National and paneuropean events in the neurology field NEURO patients associations from Romania: SM, ALZ, PKS, dystonia, miastenia gravis, Huntington, SMA, ALS, epilepsy, stroke, migraine etc.), 50-100 participants/event. Recognition: SNR Sponsor: EFNA + local

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2017

 3 teams, 15 swimers (5 with MS)  6.000EUR

FUNDRAISING

  • 1. SWIMATHON

2018

 4 teams, 20 swimers (7 with MS + 1 MS kid + 2 doctors)  8.000EUR

2019

 4 teams, 19 swimers (7 with MS, 1 doctor)  8.350EUR

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FUNDRAISING

  • 2. GALANTOM

Birthday donations 2018

 3 galantoms  2885 RON / 1500 RON / 1845 RON

Marathons

 4 runners  >2.500EUR

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FUNDRAISING:

  • 3. MS WALK

First edition

 April 2019  Partner: ASTRA Museum, open-air, Sibiu

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BUDGETS

Budget:

  • 2016 - 3.500EUR
  • 2017 - 25.000EUR (30%

pharma)

  • 2018 - 75.000EUR (25%

pharma)

  • 2019 – 79.000EUR (40%

pharma) Pharma Companies: Merck | Novartis | Janssen TEVA | Roche | Bayer Sanofi/Genzyme | Biogen

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Sponsorizari pharma per proiect

EXPENSES

Cheltuieli

Costs:

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 New MS Centers opening >15+ and Multidisciplinary / Excellence MS Centers  Access to treatments (România 8 vs Europa +5): HTA criteria improvement + cost volum contracts (ANMDM + MS +CNAS)  Access to psychological services  Access to neurorehabilitation services

FOCUS 2020

 Big data: patients registry  Awareness campaigns  Partners for European projects RO+UE  Premise and accreditation  Patients empowerment

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TKS!

Cristina Vladau Vicepresident, APAN Romania www.afectiuni-neurodegenerative.ro www.facebook.com/APANRomania info@afectiuni-neurodegenerative.ro