Looking to level up your presence on Facebook? 🚀

Enrol in our course on The Hub!

Expect to learn:

🤔 If Facebook is right for your patient group

📲 How to set up a Facebook page

⏰ When you should post on Facebook

And more!

Register for free here:

ow.ly/Hxuj50R4fL1

Register now for the MCDS-Therapy Final Conference!

👉 Join to ask your burning questions and see what the consortium has achieved throughout the international research collaboration.

Register here: ow.ly/LW5g50RcZ0N

Secure your place at #ECRD2024 !

ECRD is the largest, patient-led, rare disease policy-shaping event, an opportunity to network and exchange insights with the rare disease community.

❗Get 15% off online attendance: ECRD24_MediaPx_OnL153

rare-diseases.eu

Explore our new course on The Hub!

👉 Introduction to advanced therapies

What will you learn?

💡 What advanced therapies are
💡 Funding advanced therapies
💡 Developing advanced therapies

And more!

Register now:

ow.ly/i5bS50R6BXN

Register now for the MCDS-Therapy Final Conference!

👉 Come along to ask your burning questions and see what the consortium has achieved throughout the international research collaboration.

Register here: ow.ly/LW5g50RcZ0N

'Great Ormond Street Hospital (GOSH), supported by LifeArc has announced plans to revolutionise how children living with a rare disease can gain access to life-changing treatments.'

Read more here: 👇

ow.ly/q0Ih50Re5YH

If you are an early-stage patient group looking to recruit new trustees, plan to in the near future or are an established group looking to refresh their board, view tips for recruiting trustees to your board!

With thanks to Getting On Board

Watch now: 👇

ow.ly/tBrA50QpAmS

Well done to you all for taking on this challenge, good luck on Sunday! 🧡

NEW series - Decoding Diagnostics!

This series will provide clarity and guidance to individuals and communities within the rare disease space.

👉 Part 1: Exploring the world of genetic testing
👉Part 2: Navigating a genetic diagnosis

Find out more:

ow.ly/v4EH50R4iYx

Looking to elevate your expertise, shape the future of rare diseases and network with the people making it happen? Attend #ECRD for all this and more!

Use the code: ECRD24_MediaPx_OnL153 for 15% off all online registration categories.

Register here:👇

ow.ly/IBhE50QJLtl

Are you living with skeletal dysplasia, musculoskeletal conditions, or specific childhood cancers?

Make your voice heard on treatment preferences in MCDS-Therapy 's survey!

The survey will take 30 mins to complete and it closes on 30th April.

ow.ly/Hrm750QZwlk.

Explore Sibs 's NEW report, 'If Only You Knew' which shares school experiences of siblings of disabled children.

'74% didn't receive any help from school to support them as a sibling'.

Read the full report here: 👇

ow.ly/uKH350Rch5k

Join MCDS-Therapy at their Final Conference!

They're celebrating the outcomes of this international research collaboration by bringing the MCDS and rare bone disease community together. 🙌

Find out more: ow.ly/SFYH50RcfEB

We are so happy to say that the winner of The Student Voice Prize's English as a Second Language category Diya Porwal has written a blog all about her experience applying and the advice she would give to future applicants! 😃

m4rd.org/2024/04/16/my-…

Make your voice heard and support the Huntington's Disease community!

HDYO have launched a series of surveys to better understand different aspects of our community’s lives as they continue their journey with HD.

Find out more here: 👇

ow.ly/EWHu50RcbIB

High ammonia kills and people are dying because of overlooked symptoms. This needs to change.

Support the “Think Ammonia!” campaign from Metabolic Support UK which aims to improve outcomes for high ammonia!

#ThinkAmmonia

ow.ly/Ighi50RajS7

NEW guide on The Resources Hub!

Learn how you can connect with stakeholders across the rare disease field and raise awareness of your rare condition, patient group and mission on #LinkedIn .

🤔Not registered on The Hub yet? Register now for free:

ow.ly/rIyp50R6ATW

Get tickets for #ECRD2024 !

📆15th & 16th May

ECRD is the largest, patient-led, rare disease policy-shaping event, an opportunity to network and exchange insights with the rare disease community.

❗Get 15% off online attendance: ECRD24_MediaPx_OnL153

rare-diseases.eu

Apply by midday today! ⏰

Take this opportunity to join the Patient Group Mentoring Programme where you can share experiences and gain valuable knowledge.

Apply to be a Mentee or Mentor here:

ow.ly/RXEE50R6qv2