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PATIENT SUPPORT

This campaign has been funded and developed by BioMarin in collaboration with six patient groups and their memberships: AMMeC and Cometa A.S.M.M.E (Padua) (Italy), Les Feux Follets (France), Svenska PKU-föreningen (Sweden), PKU Aile Derneği (Turkey), and FEEMH (Spain).

You can find out more information about the patient organisations who have collaborated to create and drive this campaign, the support they offer and the work they do, by contacting them using the details below.

AMMeC

ITALY

AMMeC (Associazione Malattie Metaboliche Congenite) is an Italian association for neurometabolic diseases responsible for providing support to patients and their families. The association’s objectives include promoting greater knowledge of metabolic diseases, stimulating medical scientific research and prevention, as well as ensuring the adequate training of doctors looking after patients with these diseasesammec@ammec.it

+39 349 7656574

 

Cometa A.S.M.M.E (Padua)

Italy

COMETA ASMME is an Italian association for patients with metabolic diseases, including PKU. The association is committed to supporting people affected by hereditary metabolic diseases and promoting financing research into metabolic disease. In addition, Cometa ASMME focuses on raising public awareness about both the existence and severity of these diseases and making health authorities aware of the specific and continuous medical assistance needed to allow patients to integrate with society.info@cometaasmme.org

049.8962825

 

Federación Española de Enfermedades Metabólicas Hereditarias, (FEEMH)

Spain

FEEMH is a non-profit Spanish association with a mission to improve the quality of lives of those affected by hereditary metabolic diseases. The association achieves this through psychological and nutritional workshops, providing subsidy for the purchase of low protein food, raising awareness, collaboration in research, and the expansion and homogenisation of neonatal screening at regional levels.

fedecion@metabolicos.es

910 82 88 20

 

Svenska PKU-föreningen

Sweden

Svenska PKU-föreningen is a Swedish organisation founded in 1991 and is part of the Rare Diagnosis Association. The association aims to improve the lives of PKU patients and their families. This is reflected by the association’s objectives which include spreading information about PKU, promoting greater choice of diet products and working towards clear guidelines on PKU.

Eva.falkcarlsson@pku.se/marcus.strandepil@pku.se

+46 73 336 58 18

 

PKU Aile Derneği

Turkey

PKU Aile Derneği is a Turkish PKU association with objectives focused around improving the lives of people affected by PKU. These objectives include providing training on the treatment of individuals with PKU, preparing and implementing special education/rehabilitation programs for people with disabilities, and working in cooperation with relevant institutions on dietary products.

info@pkuaile.com

212 613 42 81

 

Les Feux Follets

France

Les Feux Follets is a French national association of parents of children and adults with inherited metabolic diseases treated by a strict diet, including PKU. The association’s mission is to transmit scientific and medical information through professionals, provide advice, enable families to meet and share their experiences and provide administrative support to families.

It’s important to Les Feux Follets that they bring children, adolescents, adults and people around them to help them and support them in their daily management of the disease. They work to achieve this is in many ways, for example, the association organises regional workshops around cooking/illness

lesfeuxfollets@phenylcetonurie.org

06 98 87 31 31

 

Job code: EU/PKU/0435 | Date of prep: June 2019