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 other 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!