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
• Coordinator
• Project manager
• Scientific adviser
• Administration
• Medical team

Advisory committee

Foundation trustees

External advisers

• Morrys Kaisermann
• Ana Aránda
• Belén Sagastizabal
• Belén Pimentel
• Dr. Fuentes

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

Fundamental mission

2000

• Constitution of the ALPE Achondroplasia Foundation
• 1st International Meeting about achondroplasia
• Publication of the booklet for schools
• 2nd International Meeting about achondroplasia

2002

• 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.
• Collaboration agreement with UNED
• Calendar: Atlético Madrid and achondroplasia.

2006

• Agreement with the Royal Board on Disability.
• Agreement with the University of Extremadura.
• Agreement with the Applied Psychology (SPA)- UNED
• Publication of “The Little Prince in the Lost Kingdom”.

2007

• Scientific meeting in Gijon.
• ”A New Horizon”: Achondroplasia Guide.
• “Give Us Your Voice” campaign
• Documentary “Don´t Call Me Dwarf”.

2008

• PhD thesis “Social Stigma in Achondroplasia and its

Impact on the School Environment” - Saul Fernández

• Documentary “Short Steps, Heavy Footsteps”
• Agreement with CERMI.
• Mention of achondroplasia by Royal Decree on the

early retirement of the disabled.

2009

History

• 4th International conference: “Ten Years Sailing”.
• Commission on Disability - House of Deputies.

2010

• 3rd International Conference of the Inclusive School
• Biomechanical research project “Improvement of

Physical Activity in People with Achondroplasia, Elongated and Not Elongated”

• First summer camp
• Creation online clinic: www.consultorioalpe.com
• Publication of the tale “Let the Sun Rise!”

2011

• 1st ALPE Awards
• Campaign “Achondroplasia without clichés – I am

much more than an appearance. “

2012

Recognition of ALPE good practices activity by the Observatory on Health Integrated Models [OMIS]

2013 2014

• 2nd ALPE Achondroplasia Awards
• 5th International Congress on Achondroplasia and
• ther dysplasias.

2015

• ”Lucas Adventure” Documentary
• 2st ALPE Awards

2016

Psychology webinars on achondroplasia

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

monitoring ACH

• Free advice and therapy, in a biological

perspective

• Coordination with local hospitals
• Information and Guidance Services:

reception, processing and dissemination

• Psycho-educational support
• Relations with public administrations
• National and international Communication
• Advisory service
• school monitoring.
• Coordination with educational institutions

Social Educational Medical

90% 3% 3% 2% 1% 1%

Skeletal Dysplasias

Achondroplasia Hypochondroplasia Mucopolysaccharidosis Pseudoachondroplasia Spondyloepimetaphyseal dysplasias Undiagnosed dysplasias

ALPE follow-up

1600 patients

Children Adults 10% 90%

ACH patients

• Spain
• Portugal
• Italy
• France
• Switzerland
• UK

Country of origin

• USA
• Indonesia
• Philippines
• Bulgaria
• Morocco
• Mexico
• Argentina
• Uruguay
• Chile
• Colombia
• Peru

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

Spain

• 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

Diagnostic service

The ALPE clinic

• 1. Early stimulation
• 2. Prevention of recurrent pathologies
• 1. Better QOL
• 2. Improved capacities
• 3. Increased social integration

Therapies

Outcomes

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

Standard assessments

Social Media

7500 followers 49 videos

Physiotherapy

29 videos

Psychology

11 videos

Website

Congress and conferences

Summer camp

Thank you!