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Sexual and Reproductive Health Issues in Rare Disease - 2024 NORD Living Rare Forum 

National Organization for Rare Disorders (NORD)
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This candid conversation about Sexual and Reproductive Health Issues in Rare Disease was held at the 2024 Living Rare, Living Stronger NORD Patient and Family Forum on June 8, 2024 in Los Angeles, California.
Panelists included Michelle Fynan, Clinical Sexologist and Sex Therapist; Andre Harris, Board Member and Legislative Director of the Sickle Cell Association of Houston; Esmeralda Vazquez, Rare Blood Disorders Account and Community Manager at Genentech; and Taylor Kane, Founder and Board Chair of Remember the Girls, an organization focused on X-linked conditions.
Learn more at livingrare.org.

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15 окт 2024

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Комментарии : 1   
@plymouthlad38
@plymouthlad38 3 месяца назад
This is an important topic for patients with Kallmann syndrome like myself. It is not an easy topic to discuss in an open forum like this. It is often discussed at patient meetings or on line discussions in patient forums. I think most patients benefit from being able to talk to fellow patients who might be best placed to offer advice and support. In Kallmann syndrome you have the twin problems of abnormal puberty and infertility, both of which are not easy topics to bring up in any discussion.
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