Publications

The knowledge we have obtained about 11q syndromes comes from two important sources.

First and foremost the knowledge comes from parents sharing knowledge and experiences but we are also very grateful that we have contact with knowledgeable professionals without whom we would not have achieved this kind of knowledge about so many different aspects of the 11q syndromes.

Grossfeld, Paul
Clinical Reccomendations
The 11q terminal deletion disorders
Jacobsen Syndrome, Published on Orphanet Journal of Rare Disease 2009 (see it on Orphanet website)

Bleeding Protocol, for patients with Jacobsen Syndrome
Bleeding Protocol - German, for patients with Jacobsen Syndrome

Stroke Risk Letter in English
Stroke Risk Letter in German
Stroke Risk Letter in Dutch
Stroke Risk Letter in French
Stroke Risk Letter in Italian

Mattina, Teresa
Jacobsen Syndrome, Published on Orphanet Journal of Rare Disease 2009 (see it on Orphanet website)
Jacobsen Syndrome, Published on Medpedia

Maas, Anneke
Sleep problems in JS