October 15th, 2016 Nonprofit organization Based in Gijn, Spain - PowerPoint PPT Presentation

International Dwarfism Leadership Summit October 15th, 2016

• Nonprofit organization • Based in Gijón, Spain • Established 24th January 2000 • Funding: Patronage, private and public • No memberships Foundation trustees External advisers Advisory committee • Coordinator • Project manager • Morrys Kaisermann • Ana Aránda • Scientific adviser • Belén Sagastizabal • Administration • Belén Pimentel • Dr. Fuentes • Medical team

Fundamental mission Offer a holistic support to people with achondroplasia and their families for highest quality of life, in a clinical, psychological and social perspective  Advocacy  Medical assessments  Scientific Information  Promote scientific research  Improve image of ACH in the media  Specialists network  Intermediation with schools  Early attention guidelines  Psychological support

History • Constitution of the ALPE Achondroplasia Foundation 2000 • 1st International Meeting about achondroplasia • Publication of the booklet for schools 2002 • 2nd International Meeting about achondroplasia • Presentation of the book “My (in)dignity in Your Hands” 2005 • Golden Cross of the Civil Order of Social Solidarity • 3rd International Meeting about Achondroplasia • Latin American Network for ACH. 2006 • Collaboration agreement with UNED • Calendar: Atlético Madrid and achondroplasia. • Agreement with the Royal Board on Disability. • Agreement with the University of Extremadura. 2007 • Agreement with the Applied Psychology (SPA)- UNED • Publication of “The Little Prince in the Lost Kingdom”. • Scientific meeting in Gijon. • ”A New Horizon”: Achondroplasia Guide. 2008 • “Give Us Your Voice” campaign • Documentary “Don ´ t Call Me Dwarf”. • PhD thesis “Social Stigma in Achondroplasia and its Impact on the School Environment” - Saul Fernández • Documentary “Short Steps, Heavy Footsteps” 2009 • Agreement with CERMI. • Mention of achondroplasia by Royal Decree on the early retirement of the disabled.

• 4 th International conference: “Ten Years Sailing”. 2010 • Commission on Disability - House of Deputies. • 3 rd International Conference of the Inclusive School • Biomechanical research project “Improvement of Physical Activity in People with Achondroplasia, 2011 Elongated and Not Elongated” • First summer camp • Creation online clinic: www.consultorioalpe.com • Publication of the tale “Let the Sun Rise!” • 1 st ALPE Awards • Campaign “Achondroplasia without clichés – I am 2012 much more than an appearance. “ Recognition of ALPE good practices activity by the 2013 Observatory on Health Integrated Models [OMIS] • 2 nd ALPE Achondroplasia Awards 2014 • 5 th International Congress on Achondroplasia and other dysplasias. 2015 Psychology webinars on achondroplasia • ”Lucas Adventure” Documentary 2016 • 2 st ALPE Awards

Golden Cross of the Civil Order of Social Solidarity Ministry of Labor and Social Affairs 2006 – A highly relevan National recognition for the work conducted by ALPE

ALPE overview • Alternative center for research and • Information and Guidance Services: monitoring ACH reception, processing and dissemination • Free advice and therapy, in a biological • Psycho-educational support • Relations with public administrations perspective • Coordination with local hospitals • National and international Communication Medical Social Educational • Advisory service • school monitoring. • Coordination with educational institutions

ALPE follow-up 1600 patients Skeletal Dysplasias 3% 2% 1% 1% Achondroplasia 3% Hypochondroplasia Mucopolysaccharidosis Pseudoachondroplasia 90% Spondyloepimetaphyseal dysplasias Undiagnosed dysplasias

ACH patients 10% Children Adults 90% Country of origin • Spain • Mexico • USA • Portugal • Argentina • Indonesia • Italy • Uruguay • Philippines • France • Chile • Bulgaria • Switzerland • Colombia • Morocco • UK • Peru

Diagnostic service International • Dr. Lachmann, the International Skeletal Dysplasia Registry Centre, Sinai Hospital, LA • Dr. Mackenzie, Nemours Hospital for Children, Baltimore • Prof. Superti-Furga, University of Lausanne S pain • Dr. Sandra Pérez, neurosurgeon • Dr. Carlos Rial, neurosurgeon, University Hospital Asturias Special thanks to: • Dr. Jon Paley, Paley Advanced Limb Lengthening the Institute, Florida • Dr. Ginebreda, director Pathology Unit Growth and bone reconstruction, ICATME • Dr. Jorge Knorr, Department of Orthopedic Surgery, Sant Joan de Deu, Barcelona • Dr. Sergio Sousa, Children's Hospital, Centro Universitário HospitalarCoimbra • Dr. Karen Heath, Institute of Medical and Molecular Genetics, Hospital a Paz, Madrid

The ALPE clinic Therapies Outcomes 1. Early stimulation 1. Better QOL 2. Prevention of recurrent pathologies 2. Improved capacities 3. Increased social integration Standard assessments Orthodontics - Dr. Ibaseta Audiology - Dr. Bascarán ENT - Dra. Aldama Pediatrics - Dr. León Nutrition – Laura Garde Kynesiologist - Dr. Balina Speech therapist - Belén Ojeda Physiotherapy - Carmen Barreal Osteopathy – Carmen Barreal

Social Media 7500 followers 49 videos

Physiotherapy 29 videos Psychology 11 videos

Website

Congress and conferences

Summer camp

Thank you!