Rare diseases Bone diseases Video podcast

ASBMR 2021 Rare Bone Disease Highlights

Episode 3: Patient Perspectives

Ms. Inês Alves

Ms. Charlene Waldman

Publication Date

Oct 2021

Summary and next episodes

Downloadable resources

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3/4

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4/4

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This educational programme is supported by an Independent Educational Grant from Ipsen, Kyowa Kirin and Ultragenyx

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Charlene Waldman (Rare Bone Disease Alliance, US) and Inês Alves (European Rare Bone Forum, Portugal) have created this third episode in a series of podcasts featuring the rare bone disease highlights from ASBMR 2021.

This educational programme is supported by an Independent Educational Grant from Ipsen, Kyowa Kirin and Ultragenyx.

Download PPTX

Download PDF

I agree that this educational programme:

Was valuable to me

1/4

Has improved my knowledge of this topic:

2/4

Is likely to change my clinical practice:

3/4

Was balanced and unbiased:

4/4

Listen and follow our podcasts on:

This educational programme is supported by an Independent Educational Grant from This educational programme is supported by an Independent Educational Grant from Ipsen, Kyowa Kirin and Ultragenyx

Listen on Spotify Podcasts

This educational programme is supported by an Independent Educational Grant from Ipsen, Kyowa Kirin and Ultragenyx.

I agree that this educational programme:

Was valuable to me

1/4

Has improved my knowledge of this topic:

2/4

Is likely to change my clinical practice:

3/4

Was balanced and unbiased:

4/4

Listen and follow our podcasts on:

This educational programme is supported by an Independent Educational Grant from This educational programme is supported by an Independent Educational Grant from Ipsen, Kyowa Kirin and Ultragenyx

Listen on Spotify Podcasts

This educational programme is supported by an Independent Educational Grant from Ipsen, Kyowa Kirin and Ultragenyx.

Programme summary

Duration 20 MIN
Downloadable resources Yes
Download PPTX
Download PDF
Language(s)

Listen to the podcast now

Other episodes of this series

ASBMR 2021 Rare Bone Disease Highlights

Episode 1: Day 1

ASBMR 2021 Rare Bone Disease Highlights

Episode 2: Day 2

ASBMR 2021 Rare Bone Disease Highlights

Episode 3: Patient Perspectives

Current Episode

ASBMR 2021 Rare Bone Disease Highlights

Episode 4: Full Meeting Coverage

Share this programme

This educational programme is supported by an Independent Educational Grant from Ipsen, Kyowa Kirin and Ultragenyx

Supporter Acknowledgement

This educational programme is supported by an Independent Educational Grant from Ipsen, Kyowa Kirin and Ultragenyx

I agree that this educational programme:

Was valuable to me

1/4

Has improved my knowledge of this topic:

2/4

Is likely to change my clinical practice:

3/4

Was balanced and unbiased:

4/4

Programme summary

Duration MIN
Language(s)

Listen to the podcast now

Other episodes of this series

ASBMR 2021 Rare Bone Disease Highlights

Episode 1: Day 1

ASBMR 2021 Rare Bone Disease Highlights

Episode 2: Day 2

ASBMR 2021 Rare Bone Disease Highlights

Episode 3: Patient Perspectives

Current Episode

ASBMR 2021 Rare Bone Disease Highlights

Episode 4: Full Meeting Coverage

Share this programme

This educational programme is supported by an Independent Educational Grant from Ipsen, Kyowa Kirin and Ultragenyx

Supporter Acknowledgement

This educational programme is supported by an Independent Educational Grant from Ipsen, Kyowa Kirin and Ultragenyx

I agree that this educational programme:

Was valuable to me

1/4

Has improved my knowledge of this topic:

2/4

Is likely to change my clinical practice:

3/4

Was balanced and unbiased:

4/4

Programme summary

Duration MIN
Language(s)

Listen to the podcast now

Other episodes of this series

ASBMR 2021 Rare Bone Disease Highlights

Episode 1: Day 1

ASBMR 2021 Rare Bone Disease Highlights

Episode 2: Day 2

ASBMR 2021 Rare Bone Disease Highlights

Episode 3: Patient Perspectives

Current Episode

ASBMR 2021 Rare Bone Disease Highlights

Episode 4: Full Meeting Coverage

Share this programme

This educational programme is supported by an Independent Educational Grant from Ipsen, Kyowa Kirin and Ultragenyx

Supporter Acknowledgement

This educational programme is supported by an Independent Educational Grant from Ipsen, Kyowa Kirin and Ultragenyx

I agree that this educational programme:

Was valuable to me

1/4

Has improved my knowledge of this topic:

2/4

Is likely to change my clinical practice:

3/4

Was balanced and unbiased:

4/4

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ASBMR 2021 Rare Bone Disease Highlights

Episode 3: Patient Perspectives

Ms. Inês Alves

Ms. Charlene Waldman

Publication Date

I agree that this educational programme:

Ms. Inês Alves Patient advocacy European Rare Bone Forum, Lisbon Portugal (PT)

Ms. Inês Alves

Ms. Charlene Waldman Patient advocacy Rare Bone Disease Alliance, Connecticut United States (US)

Ms. Charlene Waldman

I agree that this educational programme:

Ms. Inês Alves Patient advocacy European Rare Bone Forum, Lisbon Portugal (PT)

Ms. Inês Alves

Ms. Charlene Waldman Patient advocacy Rare Bone Disease Alliance, Connecticut United States (US)

Ms. Charlene Waldman

I agree that this educational programme:

Ms. Inês Alves Patient advocacy European Rare Bone Forum, Lisbon Portugal (PT)

Ms. Inês Alves

Ms. Charlene Waldman Patient advocacy Rare Bone Disease Alliance, Connecticut United States (US)

Ms. Charlene Waldman

Programme summary

Other episodes of this series

Share this programme

Supporter Acknowledgement

I agree that this educational programme:

Programme summary

Other episodes of this series

Share this programme

Supporter Acknowledgement

I agree that this educational programme:

Programme summary

Other episodes of this series

Share this programme

Supporter Acknowledgement

I agree that this educational programme:

Other programmes of interest

Exploring the role of targeted radiopharmaceutical treatment in NETs

Experts

Endorsed by

Rethinking hypophosphatasia (HPP) diagnosis and disease burden

Experts

Rethinking hypophosphatasia (HPP) and systemic impacts of deficient alkaline phosphatase activity

Rethinking hypophosphatasia (HPP): New perspectives on diagnosis and disease burden

Short-stature conditions, including SPIGFD

Experts

Endorsed by

Neuroendocrine tumours (NETs) shared decision-making: Exploring the patient journey and individualising treatments

Experts

Endorsed by