ORGANIZATION: UILDM LGMD Group

الموقع الإلكتروني: https://www.uildm.org/

فيسبوك https://www.facebook.com/uildm.naz

تويتر: https://twitter.com/UILDMnazionale

ما هو النوع الفرعي الذي تركز عليه مؤسستك في إدارة التنمية الدولية:

UILDM LGMD Group doesn’t focus on a specific LGMD sub-type. It refers to all LGMD types.

ما الذي ألهمك لإنشاء مؤسستك:

We have been inspired by the need of people living with a Limb-Girdle Muscular Dystrophy to be part of a representative group that could give them a voice, since it’s hard for them to find answers to their requirements and very often they are forgotten by Institutions.

ما هي مهمة مؤسستك

UILDM LGMD Group activities focus on: – Encouraging the development of a LGMD community; – Providing scientific and medical information on LGMD; – Supporting the exchange of experiences and advice between people that share the same condition.

ما هي الخدمات التي تقدمها مؤسستك

We have created two WhatsApp groups: one to provide news and updates on LGMD world, the other one is an open self-help group where members can exchange ideas, experiences and advice. We organize regular online meetings to provide peer-to-peer exchanges and share information about the group’s activities. We also organize online webinars with specialists from the scientific and medical world in accordance with our Scientific Committee.

ما أكثر ما تفخر به مؤسستك

The group is very motivated and is still increasing in number. The members are willing to help each other, and they often find solutions to common problems together.

ما الذي تريد أن يعرفه العالم عن مؤسستك:

We want people to know that UILDM LGMD Group exists and is available for all the LGMD community. The more our group grows, the more we can give power to our requests.

كيف يمكن للأشخاص المشاركة في دعم مؤسستك:

People can be involved writing at the mail address gruppocingoli@uildm.it and asking to join our WhatsApp group. They can also find update on our activities on the UILDM website and Facebook page.

ما هي أفضل طريقة للاتصال بمؤسستك:

People can reach us by email at the address gruppocingoli@uildm.it