We were back in Harrogate in March for an action packed conference highly focused on hypoparathyroidism. All our work with Ascendis came to fruition and we have so many people to thank, especially to Lucy Weigall and Tania Gelmetti for representing us.
Our patient survey (which had 402 respondents, the largest number to date in a survey highlighting the areas of significant unmet need in hypoparathyroidism) was co authored by Liz Glenister, Atiya Kenworthy, Ben Whitehouse, Anna Tran and Rosa Willock and kindly presented for us at the BES poster presentation by Dr Atiya Kenworthy. You can read the abstract here https://www.endocrine-abstracts.org/ea/0109/ea0109p82
We hope to also present an abstract on this study with Prof Jeremy Turner to BAETS 2025
We took part in a well attended symposium where Tania Gelmetti gave an excellent patient perspective on the presentation about the new hypoparathyroidism registry by Dr Narendra Reddy. Prof Jeremy Turner and Heide Siggelkow also spoke.
The long planned Ascendis Seeds of Change awareness campaign was developed Ben Whitehouse and team with Liz Glenister and Helen Hopkins and our beautiful butterfly mural was painted by hypopara patient and artist Lynn Norris. Patients had been contributing words and images to the design and physicians were also invited to add their contributions on the day. The launch and speeches by Lucy Weigall and Lynn Norris were was well attended and the finished butterfly will be revealed on World Hypopara Awareness day on 1st June.
Huge thanks to Ben and team at Ascendis and to Lucy, Tania and Lynn Norris who represented us at BES, to Liz and Helen behind the scenes and to the hundreds of patients who contributed to the patient survey and the awareness campaign – a really great collaborative job!