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

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.

ABOUT APAN Romania 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)

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

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

YOUNG MS PEOPLE NATIONAL CONFERENCE 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

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

MS NAVIGATOR Support for new diagnostic + communication  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.)

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

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

#SPISM Psychological services support + research  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 Plans : emotional, cognitive, somatic, gender identity, couple, family, parenthal, authority, social, existential Partners : Psychos Institute, Faculty of Psychology / master, Psychologists Colegium

ROSE IN ACTION: MS REHABILITATION Resistance, peace and cadence 2019 #SMove support App  Rehabilitation incentives (swimming, kineto,  rehabilitation video exercices (dedicated FB page) fizio, dance courses etc.)  incentives after x months: abonaments, devices etc.  5.000 EUR/ 40 pers.  rehabilitation doctors anf phisicians etc. Partners and grants : Needed!!!

PROGRAM 'LA PLIMBARE CU SM' Volunteers support for going outside the house, parcs, malls, theaters, cinema, shopping etc. 2016-2019:  Beneficiars: MS patients with locomotor disabilities or PPMS or pearsons in need  Psychoterapy, kinetotherapy  1 coordinator, volunteers

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

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

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

FUNDRAISING 1. SWIMATHON 2018 2017 2019  4 teams, 20 swimers (7 with MS  3 teams, 15 swimers (5 with MS)  4 teams, 19 swimers (7 with MS, 1 doctor) + 1 MS kid + 2 doctors)  6.000EUR  8.350 EUR  8.000EUR

FUNDRAISING 2. GALANTOM Birthday donations 2018 Marathons  3 galantoms  4 runners  2885 RON / 1500 RON / 1845 RON  >2.500EUR

FUNDRAISING : 3. MS WALK First edition  April 2019  Partner: ASTRA Museum, open-air, Sibiu

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

EXPENSES Sponsorizari pharma per proiect Cheltuieli Costs:

FOCUS 2020  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  Big data: patients registry  Awareness campaigns  Partners for European projects RO+UE  Premise and accreditation  Patients empowerment

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