ORGANIZATION: UILDM LGMD Group

웹 사이트: https://www.uildm.org/

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

트위터: https://twitter.com/UILDMnazionale

조직이 중점을 두고 있는 LGMD 하위 유형은 무엇인가요?

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

조직을 만들게 된 계기:

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.

조직의 미션은 무엇인가요?

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.

조직이 제공하는 서비스

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.

귀사의 가장 자랑스러운 점은 무엇인가요?

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.

조직에 대해 세상에 알리고 싶은 내용:

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.

사람들이 조직을 지원하는 데 어떻게 참여할 수 있을까요?

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.

조직에 연락하는 가장 좋은 방법은 무엇인가요?

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