ORGANIZATION: UILDM LGMD Group
WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUSES ON:
UILDM LGMD Group doesn’t focus on a specific LGMD sub-type. It refers to all LGMD types.
WHAT INSPIRED THE CREATION OF YOUR ORGANIZATION:
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.
WHAT IS YOUR ORGANIZATION’S MISSION:
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.
WHAT SERVICES DOES YOUR ORGANIZATION PROVIDE:
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.
WHAT IS YOUR ORGANIZATION MOST PROUD OF:
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.
WHAT DO YOU WANT THE WORLD TO KNOW ABOUT YOUR ORGANIZATION:
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.
HOW CAN PEOPLE BECOME INVOLVED IN SUPPORTING YOUR ORGANIZATION:
People can be involved writing at the mail address [email protected] and asking to join our WhatsApp group. They can also find update on our activities on the UILDM website and Facebook page.
WHAT IS THE BEST WAY TO CONTACT YOUR ORGANIZATION:
People can reach us by email at the address [email protected]