Multi-Lingual Portal Launched to Help Parents of Children Born With Limb Difference
Embargoed until 00.01 hours Friday July 31, 2015
A multi-national portal to provide advice and support services for the parents of children born with limb disabilities is being launched today (Friday July 31). The site can be accessed via whatifyourbaby.org.
The portal is run by an umbrella body of organisations of people affected by congenital limb difference called EDRIC (European Dysmelia Reference Information Centre).
The project was made possible following a crowdfunding campaign with Indiegogo. A total of €17,000 (then the equivalent of £13,400) was raised.
EDRIC's research showed that new and expectant parents of limb different children were desperately seeking answers and not finding the right information. The 'What If? Your Baby Has a Limb Difference' portal was created to fill that gap.
The portal is available in five languages - English, French, Spanish, Italian and German. Short videos and blog articles are accompanied by a directory of services including specialist clinics and support groups. Social media will be used extensively to promote the site.
"Having a child with a limb difference often comes as a shock to parents, many of whom don't know who to turn to for help," said EDRIC Chairman Geoff Adams-Spink.
"Now that we've launched the site, we're hoping that parents and those living with a limb difference will feel inspired to contribute their own videos and blogposts to help new and expecting parents to find the answers that they so desperately need."
Prior to launching the portal, EDRIC undertook research that showed that the majority of parents of children with congenital limb difference (known as dysmelia) are unaware of any available resources. A survey conducted by the organisation showed that 80% were not aware of any sources of help or advice to support them during their child's early years.
Four respondents reported that they were given less than an hour to decide whether or not to terminate pregnancy after a diagnosis of limb difference. Another respondent said she was offered a termination five months into the pregnancy - her child had just one hand missing.
"We need to turn this situation around," said Mr Adams-Spink.
"People are either shocked when their child appears or they have an ultrasound scan and are unsure whether or not to proceed with the pregnancy. It's important, at this time, that parents or parents to-be are aware that people live happy and fulfilled lives with a limb difference."
The organisation is keen to stress, though, that it is not part of any pro-life lobby: it believes that women have the right to determine what happens to their bodies and that an informed decision will be the right one for the parent or parents concerned.
NOTES FOR EDITORS
- For further information in French or English please email EDRIC Chairman, Geoff Adams-Spink or call +44 7711 898787
- For further information in German please email EDRIC's Chief Operating Officer, Tobias Arndt or call +32 483 73 65 19
- For further information in Italian please email EDRIC's Treasurer, Salvatore Giambruno or call +39 348 8749160
- The funding campaign's launch video can be seen here
- The European Dysmelia Reference Information Centre is a non-profit NGO registered in Sweden (no. 802444-3015)
- EDRIC has 31 member organisations in 20 countries - the majority of them EU member states, but some as far a field as Chile and Australia - and represents more than 6,000 people living with limb difference
- EDRIC runs an online Dysmelia Network (DysNet) supported by a frequently-updated, multi-lingual website, supported by social media activity on Facebook, Twitter and YouTube, and has an online multi-lingual forum, RareConnect, for information sharing and peer support
- Dysmelia describes a number of extremely rare conditions - further details are available from DysNet
Tags: What If? What If Your Baby? Dysmelia Disability Pregnancy Ultrasound Press Release