RareConnect

Share what you have learned about as a caregiver. Share what you have been told by doctor. Share articles you feel might be worth reading or websites worth visiting:
https://www.rareconnect.org/en/community/spinocerebellar-ataxia-type-29

Join community to ask your questions and connect with other families living with Au-Kline syndrome across the world 👇
https://www.rareconnect.org/en/community/au-kline-syndrome

families are waiting for you! Share your story & connect with others worldwide in the Nephrotic Syndrome community
👉https://rareconnect.org/en/community/nephrotic-syndrome

🔎 Do you know someone living with
who would like to connect with another family affected by this ? Interested? Send us an email or visit:

https://rareconnect.org/en/community/rareconnect

Did you miss your chance to submit your EURORDIS Black Pearl Awards nomination?
It's your lucky day! The deadline has been extended to September 11.

Submit a nomination now and help recognise "the major achievements and outstanding commitment of all those going the extra mile to improve the lives of the 300 million people living with a rare disease in the world and the 30 million in Europe." (EURORDIS Chief Executive Officer - Yann Le Cam)

👉 blackpearl.eurordis.org/nominate/

Ring20 Families Conference 2022 goes HYBRID! If you can't attend in person you can join LIVE online...There is a lot of information to share with a focus on new research opportunities for r(20) syndrome.

REGISTER to join online here: https://qrco.de/ring20fc22 or visit Ring20 Research & Support UK CIO for more information.

Latest programme available here:
https://ring20researchsupport.co.uk/for-families/families_conf_2022/

➡️ Connect with others globally in the Ring Chromosome 20 Syndrome community:
Ring20 Families Conference 2022 goes HYBRID! Can't attend in-person? Then join LIVE online...There are lots of information to share with a focus on new research opportunities for r(20) syndrome.

Newborn 👶 Screening Awareness month has started!

Newborn Screening is key in providing early diagnosis 👨‍⚕️ which leads to a better life for people living with a rare disease.

Do you want to learn more? Every Thursday in September, we will share our work on Newborn Screening!

Check out EURORDIS' key principles for Newborn Screening (available in 12 languages) here 👉 cutt.ly/YCuPEYe
Learn more about EURORDIS' work here:
👉 cutt.ly/xCuPUd0
👉 screen4care.eu

🔎 We're looking for people affected by any of these that would like to connect with others living with the same condition. Interested? Send us an email at [email protected] or visit:
https://rareconnect.org/en/community/rareconnect

Share this image and help us !

Just a few more days left to nominate your candidate for the Black Pearl Award! Nominations can be submitted for any individual, organisation or company for any of the 12 categories below: https://blackpearl.eurordis.org/nominate/

❓ Could you be our next awardee?

The EURORDIS Leadership Award celebrates individuals whose outstanding advocacy work has benefited the rare disease community🧑‍🤝‍🧑 by educating decision-makers, the public, and the media, or by affecting policy and legislation.

If you, or someone you know, has demonstrated effective advocacy 💪 in the field of rare diseases, don't forget to submit a nomination now!

✅ blackpearl.eurordis.org/nominate/

Create your team or join the GACI Global worldwide walk 👇

👉Join the community:
https://rareconnect.org/en/community/hereditary-rickets

Please join us in this year's Worldwide Walk. Patients and families affected by GACI and ARHR2 need your support. You can help by creating or joining a team, or by making a donation.

Donate/sign up here: https://gaciglobal.org/gaci-global-worldwide-walk/

🔎 Do you know someone living with who would like to connect with another family affected by this ? Interested? Send us an email at [email protected] or visit:

+INFO 👉 rareconnect.org/en/community/r…

🔎 Do you know someone living with
in the who would like to connect with another family affected by this ? Interested? Send us an email at [email protected] or visit:

+INFO 👉 https://rareconnect.org/en/community/rareconnect

Do you have a child or family member with an undiagnosed condition? We want to hear your experiences so that we can best support you.

Please complete or share our survey.

We want to hear from:
- Families affected by a syndrome without a name (any family member)
- Parents or family members of a child who now has a diagnosis of a very rare condition but had a long journey to diagnosis, or who has been told that a variant of unknown significance has been found.

👉 http://ow.ly/o6NY50KciIw

Are you someone who has manifested a life-long dedication to addressing the needs of people living with a rare disease? If you have:
📢 Represented patient voices on a European or international scale
💪 Driven positive change in rare diseases
🌐 Been involved in national and European or international committees and advisory groups..Then you are the Lifetime Achievement Awardee 🏆 we are looking for!
✅ Nominate yourself or someone you know: blackpearl.eurordis.org/nominate/

Today is Awareness Day!

👉Meet others across the world & share your story in the Coats Disease community: https://rareconnect.org/en/community/coats-disease

Get involved in spreading awareness today 👇

Did you know? As of 2022, almost 2/3 of the world's population uses some form of social media 📱.

Whether it be sharing videos of a rare disease journey 📹, raising awareness for a rare condition, or advocating for change 💪, the Black Pearl Social Media and Media Awards 🏆 celebrate those who use different platforms creatively as a voice for the rare disease community.

👉 Do you have a potential awardee in mind? blackpearl.eurordis.org/nominate/

What should you know before participating in a cancer clinical trial?

Attend the Tuesday, August 23 Patient Empowerment Network webinar, “Participating in a Clinical Trial: What You Need to Know.” Dr. Pauline Funchain, cancer expert and researcher, will share insights about what to expect when joining a clinical trial. Patient advocate and colorectal cancer survivor, Cindi Terwoord, will also join to share her experience and advice for others with cancer.

You can learn more about this webinar here: https://bit.ly/3OXxOuf

🔎 Do you know someone living with who would like to connect with another family affected by this ? Interested? Send us an email at [email protected] or visit:

+INFO 👉 https://rareconnect.org/en/community/rareconnect

It's and Appendix Cancer Awareness Month!

Visit Pseudomyxoma Survivor ACPMP - Appendix Cancer / Pseudomyxoma Peritonei Research Foundation Asociación Peritoneum to get involved in raising awareness.

👉 Join RareConnect's PMP community today & meet others worldwide:
https://www.rareconnect.org/en/community/pseudomyxoma-peritonei

August has finally arrived, the month where we shout from the rooftops about cancers of the appendix and pseudomyxoma peritonei! A rare cancer most people will never need to know about it or ever experience its impact but 'what if' our posts meant someone out there was correctly diagnosed and went on to receive the correct treatment as a result? Worth a share we think.

Rare Connect helps you find your rare community 🤝 to build new connections and share resources.
Recently, they have established a new online community 💻 for Leukoencephalopathy with Brain Stem and Spinal Cord Involvement and Lactate Elevation (LBSL)!

👉 If you or someone you know is affected by LBSL, please refer them to this dedicated platform: https://cutt.ly/PZnUSzs

August is International Autoinflammatory Awareness Month!

Follow Autoinflammatory Awareness Month page to join in raising awareness for autoinflammatory diseases and take part in the events throughout the August.

➡ RareConnect has international patient communities for many autoinflammatory diseases, including FMF, CAPS, MKD/HIDS, CRMO, TRAPS, Schnitzler’s Syndrome, and Behçet’s. Join your community today: rareconnect.org/en/communities

📅The deadline to apply and become an ePAG advocate has been extended until 30 September!
If you want to pave the way for faster diagnosis and research 🔍, as well as capture the needs of your patient community at the European level, look no further.
✅ Join now, and become the voice of your community!

✉️ : [email protected]

For patient representatives, capturing the needs of your patient community 🤝and relaying this to clinicians, hospital managers, and decision-makers can often be a challenging task.
📢 That's why EURORDIS and the wider rare disease community co-created a guide full of practical tips and complementary resources, to help you listen to your patient community and act on their feedback!

👉 Read now: http://l.eurordis.org/eyBY

Drug Development for Rare Diseases: A Community Conversation

🔎 Do you know someone living with 3q27.3q29 who would like to connect with another family affected by this ?

+INFO 👉 https://www.rareconnect.org/en/posts/b4c6c2c9-ea35-4cad-80b6-7119c3673f9e

How can competing interests be managed in a multi-stakeholder environment to make engagement in medicines development easier for all 👫? Enrol in the new Open Academy e-learning course 💻 on the conflict of interest in patient engagement and learn more about:
✅ The difference between competing interests and conflicts of interests
✅ Managing competing interests using risk mitigation strategies
✅ The best practices in multi-stakeholder interactions

👉 Enrol now! http://l.eurordis.org/YyXu

If you are wanting to start advocating for yourself or others living with rare disease, it can be difficult to know where to start. Our Equity Toolkit is the perfect place to begin with your activism journey.

Download it here: https://cutt.ly/qLbsKHQ