This campaign has been funded and developed by BioMarin in collaboration with the following patient groups and their memberships: AMMeC (Italy), Cometa A.S.M.M.E (Padua, Italy), Les Feux Follets (France), Svenska PKU-föreningen (Sweden), PKU Aile Derneği (Turkey), FEEMH (Spain), PKUAI (Ireland), APOFEN (Portugal) and the Hungarian Society for PKU (Hungary).
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 (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 email@example.com
+39 349 7656574
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 firstname.lastname@example.org
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.
+34 910 82 88 20
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.
+46 73 336 58 18
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.
212 613 42 81
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
06 98 87 31 31
The PKU Association of Ireland (PKUAI), established and managed by a voluntary group of community members, aims to assist and support those living with PKU in Ireland today.
The PKUAI strive continuously for the best quality of care for those living with PKU through; raising awareness about the rare disease, advocating for more proactive and holistic lifelong care from diagnosis of newborns, continuing throughout childhood into older adulthood and providing a support network for our community.
PKAUI believe with a more determined and scientific approach to treating PKU, people living with this rare disease will secure a better quality of life and be better able to reach their full email@example.com/ firstname.lastname@example.org
Founded in 1990, the Hungarian Society for PKU provide dietary support, summer camps, scholarship programmes, support for events and information materials to families across Hungary.email@example.com+36-30/493-7738
APOFEN is a non-profit association that, in Portugal, supports PKU and other inherited metabolic disorders of protein metabolism that, although with different pharmacological approaches, share a low-protein diet. Their mission is to ensure the improvement of the quality of life of patients in a close relationship with all of them.
APOFEN promotes several activities throughout the year to accomplish their mission, such as: Mentorship Program; Family Support Program, “Young APOFEN” Group, Psychological Support; Campaigns in kindergardens and schools; Cultural Weekends for young adults; Summer Camp; National Family Meeting; Regional Meetings (islands); Cooking Workshops and Thematic Meetings.
+351 917 007 569