IAMGSD | Activities | Social media channels

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Online social media has revolutionized peer support for ultra rare diseases. Those affected around the world can find each other, exchange experiences and organize into support networks.

Facebook groups

We have IamGSD Facebook groups for GSDs 5, 7 and 9d.

FACEBOOK GROUPS HOSTED BY IamGSD

IamGSD recognizes Facebook groups as currently the pre-eminent format for responsive peer support. We wish to see high standards in these groups, with multiple Admins, active management, user guidelines and a commitment to sound information. Where groups do not meet these standards, great caution should be exercised.

We believe the Facebook groups listed below meet these standards. The postings are predominantly in English, but any language may be used. Facebook offers automated translation.

OTHER GROUPS

There are also other groups which have been created for special interests; and groups with posts mainly in their own language, such as the German group and the French group.

GENERIC GSD GROUPS

In addition there are groups covering all GSDs including the conditions we cover, for example “GSD Net” which started the online support revolution with a mailing list server back in the 1990s. When using generic groups, it is important remember that the hepatic and muscle GSDs vary enormously, and even within the muscle GSDs management can be very different.

FACEBOOK – GSD5

Facebook – GSD5

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The “McArdle’s Disease – IamGSD” group, started in 2009, is by far the largest connected group there has ever been for any muscle GSD. A “Private ” group, it currently has over 2,500 members. It is actively managed with usually dozens of posts and comments every day.

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The “McArdle Parents – IamGSD” group is a ”Private” group for parents of children with McArdle's, discussing the specific issues facing children and young people with McArdle’s. Members may speak freely without their children, or children’s friends, reading posts. Membership is open to parents or guardians, close family members or those with an expert contribution.

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The “Ketosis in McArdle’s – IamGSD” is a “Private” group. It is a special interest group for people with McArdle‘s who wish to explore and develop the experimental therapy of nutritional ketosis. It has led the way in this dietary approach and research trials have followed with more in progress and being planned.

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The group “McArdle deutsch – IamGSD” has existed since 2014 and now has over 175 members from Germany, Austria and Switzerland. Like its English-speaking big sister, it has recently become a private group in which the members can exchange comments freely and undisturbed.

FACEBOOK – GSD7

Facebook – GSD7

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The “Tarui Disease GSD7 – IamGSD” group is a ”Private” group for anyone affected by GSD7 - Tarui disease. This mGSD is very similar to McArdle’s, but there are far fewer people diagnosed, so this is a small group with around 120 members.

FACEBOOK – GSD9d

Facebook – GSD9d

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The “Glycogen Storage Disease 9d – IamGSD” group is a ”Private” group for anyone affected by GSD9d, the muscle subtype of GSD9 (the other subtypes are liver GSDs). This is an extremely rare condition, so to date there are only around 50 members.

Instagram

Our Instagram account is helping to raise awareness of Muscle GSD. Watch out for our posts.

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YouTube

There are lots of useful tips on our YouTube channel, originated by AGSD-UK but now taken on by IAMGSD.

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The IamGSD YouTube channel.

We have some professional videos on the walking courses. There are also plenty of clips on such topics as “second wind”, steeping up, and zig-zag. Watch out for more.

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The AGSD-UK YouTube channel

The AGSD-UK YouTube channel has a playlist of videos on McArdle disease.

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The Euromac Registry YouTube channel.

Euromac has an introduction to McArdle disease on its own YouTube channel.

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