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Publications

Our understanding of the chromosome 11 syndromes and other related chromosomal variations comes from two vital sources.

Primarily, it stems from parents generously sharing their knowledge and experiences. Additionally, we are deeply grateful for the expertise of dedicated professionals, whose contributions have been instrumental in broadening our insight of the many facets of the chromosome 11 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