RareConnect

RareConnect Connecting Rare Disease Patients Globally www.rareconnect.org

Living with a rare disease can be an isolating experience. RareConnect was created by EURORDIS (European Rare Disease Organisation) to provide a safe space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources. RareConnect welcomes your thoughts, comments, suggestions and questions, but make sure your posts are of general interest to most readers. We will not allow comments that contain vulgar or abusive language; personal attacks of any kind; or offensive terms that target specific ethnic or racial groups. In addition, RareConnect will not allow comments that are spam, are clearly “off topic” or that promote services or products. All links posted as comments will be reviewed and may be deleted if deemed inappropriate. Comments that make unsupported accusations will also be subject to review. RareConnect wants to engage in conversation with all constituents, but we cannot promise that every message or post will receive a response. We reserve the right to remove any inappropriate comments. Repeated violations of this Facebook policy may cause the author to be blocked permanently from the this page.

Mission: RareConnect promotes global conversation and collaboration to improve the lives of rare disease patients and assist the organizations that serve them.

Sign up to participate in a webinar lead by The Ehlers-Danlos Society on the effects of EDS and HSD in males.When? TODAY...
10/07/2019
Welcome! You are invited to join a webinar: The Effects of EDS and HSD in Males: Identifying and Addressing Unique Issues, Needs, and Concerns. After registering, you will receive a confirmation email about joining the webinar.

Sign up to participate in a webinar lead by The Ehlers-Danlos Society on the effects of EDS and HSD in males.

When? TODAY! July 10 at 3:00 pm EDT (US).

*Join the EDS RareConnect community, share experiences, ask questions, and discover your international support network: https://www.rareconnect.org/en/community/ehlers-danlos-syndrome

This webinar will synthesize research, standard knowledge, and common sense to explore how biological, anatomical, environmental, and psychosocial differences can create unique challenges for males built with the connective tissue of EDS and HSD; it is intended for patients and their caregivers, fam...

How to prepare for the first day of school when your child has special needs?Source: Complex Child Magazine
08/07/2019
Preparing for Your Child’s First Day of School

How to prepare for the first day of school when your child has special needs?

Source: Complex Child Magazine

Preparing for Your Child’s First Day of School by Brittany Long To the special needs parent who may be uneasy and anxious with the transition of starting school, know you are not alone! Your feelings are valid! If you’re anything like me, I

The following story was featured in the latest National Organization for Rare Disorders, Inc. (NORD) newsletter. In this...
05/07/2019
Jenny's ACPMP Story - NORD (National Organization for Rare Disorders)

The following story was featured in the latest National Organization for Rare Disorders, Inc. (NORD) newsletter. In this story, Jenny reflects on her life-changing experience after undergoing a clinical trial for Appendix Cancer and Pseudomyxoma Peritonei.

Join the PMP RareConnect community, share experiences, ask questions, and discover your support network: https://www.rareconnect.org/en/community/pseudomyxoma-peritonei

The following story was submitted by Jenny Malec in honor of June’s Rare Spotlight, Appendix Cancer and Pseudomyxoma Peritonei (ACPMP). In this story, Jenny reflects on her life-changing experience after undergoing a clinical trial for ACPMP. A special thanks to NORD’s Member Organization, the A...

What is your experience with #CDGTherapies? Participate in a survey developed by SINDROME CDG about the needs & expectat...
03/07/2019
4th World Conference CDG Questionnaire for Patients & Caregivers – Assessing CDG needs and solutions for future therapies

What is your experience with #CDGTherapies? Participate in a survey developed by SINDROME CDG about the needs & expectations of the CDG Community (15min):
👨‍👩‍👧‍👦 Link for FAMILIES: https://bit.ly/2EbdXGs
👩‍⚕️👨‍🔬 Link for PROFESSIONALS: https://bit.ly/2w12XqH

Take this survey powered by surveymonkey.com. Create your own surveys for free.

Through the Pemphigus & Pemphigoid online community, patients and those who care for them can communicate, sharing exper...
02/07/2019
RareConnect

Through the Pemphigus & Pemphigoid online community, patients and those who care for them can communicate, sharing experiences and information in a safe, moderated online forum.

Share your story today! It will be translated across 12 languages!

A safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages. RareConnect partners with the world's leading rare disease patient groups to offer global online communities allowing people....

Where people turn when nobody can diagnose their Illness? This story highlights the important work that the Undiagnosed ...
01/07/2019
How These Families Solved The Case Of Extreme Rare Disease

Where people turn when nobody can diagnose their Illness?

This story highlights the important work that the Undiagnosed Diseases Network - UDN is doing to find answers to health mysteries.

"I spent hours and hours and hours researching and trying to find anyone or anything that might get us down the right path to figuring out what was going on with the boys."

RareConnect has 191 specific rare disease communities, over 45,000 members, and continues growing. Find out how you can ...
01/07/2019
RareConnect

RareConnect has 191 specific rare disease communities, over 45,000 members, and continues growing. Find out how you can join the global community at rareconnect.org

A safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages. RareConnect partners with the world's leading rare disease patient groups to offer global online communities allowing people....

28/06/2019
What does DEBRA's Members' Weekend mean to you? - Dr Sarah Mundy

An excellent short video that shows how helpful rare disease patient organizations are to patients and caregivers.

Source: DEBRA UK - Debra International

DEBRA's Annual Members' Weekend and AGM recently took place on Saturday 18 May - Sunday 19 May at Drayton Manor Theme Park and Zoo. The weekend is a great op...

27/06/2019
European IPF and Related Disorders Federation

The #MyIPFstory Campaign is on!

Again this year the European IPF and Related Disorders Federation will create awareness through the #MyIPFstory Campaign about Idiopathic Pulmonary Fibrosis (IPF) through personal cases, distributed on social media all over Europe. Prepared video material will be available soon with people telling their stories as patients or relatives to loved ones with IPF.

*Join the RareConnect IPF community and connect with patients and caregivers from all over the world: https://www.rareconnect.org/en/community/idiopathic-pulmonary-fibrosis

Idiopathic Pulmonary Fibrosis (IPF) is a rare lung disease that affects 80 000 to 111 000 people in Europe. There is currently no known cure. Like Alice, share your story to raise awareness of IPF. #MyIPFstory

Visit www.eu-ipff.org/about-ipf for more information.

26/06/2019
Faces of Castleman Disease: Katie's Story

Meet one of the youngest Castleman disease warriors, Katie, and get a glimpse into her everyday battle with Castleman disease.

Source: Castleman Disease Collaborative Network

*Join the Castleman disease online community, share experiences, ask questions, and discover your support network: https://www.rareconnect.org/en/community/castleman-disease

Meet one of our youngest Castleman disease warriors, Katie, and get a glimpse into her everyday battle with Castleman disease. To learn more, please visit th...

Don't miss the opportunity to learn more about patient registries! Register to attend a webinar on 25 June at 13.00 CET ...
24/06/2019
Welcome! You are invited to join a webinar: Webinar on Rare Disease Registries. After registering, you will receive a confirmation email about joining the webinar.

Don't miss the opportunity to learn more about patient registries! Register to attend a webinar on 25 June at 13.00 CET on how to create or engage with rare disease patient registries.

Organizer EURORDIS - European Rare Diseases Organisation

As patients and families, we know very well that Rare Disease Patient Registries represent a fundamental effort upon which a number of critical activities are based to understand patient experiences and outcomes and best advance care and treatments. Register for this webinar, taking place 25 June 13...

Families with children affected by #FOXP1 mutation met in NYC in June for the first time ever in a conference with resea...
21/06/2019
RareConnect

Families with children affected by #FOXP1 mutation met in NYC in June for the first time ever in a conference with researchers. Watch now the recording of the conference on RareConnect.org

A safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages. RareConnect partners with the world's leading rare disease patient groups to offer global online communities allowing people....

"Accepting that my baby was eligible for support from a hospice broke my heart. Like many people, I had preconceived ide...
19/06/2019
When You Have a Life Limited Child Hospice Care Means So Much

"Accepting that my baby was eligible for support from a hospice broke my heart. Like many people, I had preconceived ideas about what a hospice is. I imagined a sad and depressing place; solemn and morbid. But nothing could be further from the truth. A home from home."

17th June to 23rd June is Children's Hospice Week - #ChildrensHospiceWeek2019

A parenting blog about life with an undiagnosed child, Mum blog about a son with an undiagnosed genetic condition and epilepsy

Each day during the Chromosome Disorder Awareness Week has a 'theme of the day', just to give you some ideas for things ...
19/06/2019

Each day during the Chromosome Disorder Awareness Week has a 'theme of the day', just to give you some ideas for things to share or talk about. Follow Unique - Rare Chromosome Disorder Support Group for more on the themes of the day.

17/06/2019
Living with Arthrogryposis and Anxiety

In this interview, Jessica discusses her anxiety and fear of being alone. Sadly, living with a rare disease has implications in all areas of life and can lead to stigmatization, isolation and exclusion from the social community. It's our collective responsibility to change that.

Connect with Jessica through her FB page or IG profile:
- Jessica Lappin, AMCer, Artist, Photographer
- https://www.instagram.com/amcjessicalappin/

Jessica is diagnosed with arthrogryposis and anxiety. She hopes that others will take the time to socialize with her to help lessen her anxiety. SBSK Patreon...

Today begins the 6th Chromosome Disorder Awareness Week! Only by working together and raising awareness can we help impr...
16/06/2019

Today begins the 6th Chromosome Disorder Awareness Week! Only by working together and raising awareness can we help improve the lives of those living with and affected by rare chromosome and gene disorders.

For further information on how to get involved, visit Unique - Rare Chromosome Disorder Support Group

A Canadian family is looking for people living with #TRIP4gene mutation. Their daughter is 5 years old and presents symp...
14/06/2019

A Canadian family is looking for people living with #TRIP4gene mutation. Their daughter is 5 years old and presents symptoms similar to muscular dystrophy but a whole exome test came back showing a different mutation. Very few cases are described in the medical literature.

Any help is appreciated!
> [email protected]

RareConnect.org members that do not speak English can use the platform and communicate with other members in their own l...
11/06/2019

RareConnect.org members that do not speak English can use the platform and communicate with other members in their own language thanks to the automatic translation service in 12 languages.

According to this Forbes article, the employment rate for carers is 67%, although over half of those who are not working...
10/06/2019
Raising A Disabled Child Creates Employment Challenges You Might Never Have Considered

According to this Forbes article, the employment rate for carers is 67%, although over half of those who are not working say that they want to do so.

"More needs to be done to enable and empower parent carers. Working is good not only for my bank balance but my self-esteem and mental health."

The employment rate for carers is 67%, although over half of those who are not working say that they want to do so. Here, three mothers of children with special needs share their work-life situation - the challenges they face, how they make it work and what support they'd like from the Government.

The Riggs family had a bleeding disorder that spanned three generations and affected the health of multiple family membe...
07/06/2019

The Riggs family had a bleeding disorder that spanned three generations and affected the health of multiple family members. They never knew the cause of it, the long term risks associated with it, or the impact it may have on future generations — until a genetic test revealed the answer. The test showed that they had a genetic variation in a gene called #RUNX1 causing them to have an abnormally low blood platelet count.

* Read their story here: https://individualizedmedicineblog.mayoclinic.org/2019/04/08/genetic-test-solves-mystery-of-family-bleeding-disorder

** Join RareConnect and meet people living with RUNX1-FPD from all over the world: https://www.rareconnect.org/en/community/runx1-fpd

We're looking for personal stories of people living with rare diseases to be shared on social media! Click on the link b...
04/06/2019
RareConnect

We're looking for personal stories of people living with rare diseases to be shared on social media! Click on the link below for more details.

A safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages. RareConnect partners with the world's leading rare disease patient groups to offer global online communities allowing people....

03/06/2019
Good Morning Peyton

How one community came together to give a local boy living with #XerodermaPigmentosum the surprise of a lifetime by turning night into day.

You Can #DoYourShare for Rare Disease Imagine never being allowed to feel the sun on your skin. For 11-year-old Peyton, who is allergic to sunlight, that's a...

Quite often doctors dismiss patients saying it's just back pain when, in fact, could be a rare disease called #arachnoid...
31/05/2019

Quite often doctors dismiss patients saying it's just back pain when, in fact, could be a rare disease called #arachnoiditis, a pain disorder caused by the inflammation of the arachnoid, one of the membranes that surround and protects the nerves of the spinal cord.

Meet other people talking about living with Arachnoiditis on RareConnect. Join the conversation, share experiences, ask questions, and discover your support network: https://www.rareconnect.org/en/community/arachnoiditis

Seth Rotberg discusses in this podcast the difficulty in choosing to have genetic testing for #HuntingtonsDisease and ho...
29/05/2019
#102 Seth Rotberg on Huntington Disease

Seth Rotberg discusses in this podcast the difficulty in choosing to have genetic testing for #HuntingtonsDisease and how those results have shaped his future.

Patient Advocate and Motivational Speaker shares his journey with Huntington Disease.

The EURORDIS Digital School aims at empowering patient advocates, working with rare diseases and rare cancers, to use di...
29/05/2019

The EURORDIS Digital School aims at empowering patient advocates, working with rare diseases and rare cancers, to use digital communication tools to improve the strategic outreach and community-building capacities of their organizations. The applications are open until the 7th of June!

Are you a patient advocate working in the field of #rarediseases & rare cancers? Apply now for the #EURORDISDigitalSchool, a new face-to-face training on using digital communication tools taking place 8-9 October in Sweden. openacademy.eurordis.org/digitalschool/

Spreading the word about your reality of living with a rare disease is a great way to raise awareness. Consider sharing ...
25/05/2019

Spreading the word about your reality of living with a rare disease is a great way to raise awareness.
Consider sharing your story with your community. It will be translated across 12 languages! https://www.rareconnect.org/en/communities

Nominations for Black Pearl Awards 2020 now open!
24/05/2019

Nominations for Black Pearl Awards 2020 now open!

Nominate a rare disease star for a EURORDIS #BlackPearl Award by 13 September. The #EURORDISAwards2020 honour individuals, organisations & companies that go the extra mile for people living with a rare disease! See all the awards categories: blackpearl.eurordis.org/nominate/

We are helping an Australian family to find others living with with Van Maldergem syndrome. If you know someone affected...
23/05/2019
RareConnect

We are helping an Australian family to find others living with with Van Maldergem syndrome. If you know someone affected by this rare condition please contact us at [email protected] or click on the link below.

A safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages. RareConnect partners with the world's leading rare disease patient groups to offer global online communities allowing people....

22/05/2019
Painting Bodies to Answer, "What If We Could See Chronic Ehlers-Danlos Sydrome Pain?"

In this video shared by The Ehlers-Danlos Society on Twitter, three women paint their bodies to show what would it look like if people could see their EDS/ HSD symptoms.

Join the conversation, share experiences, ask questions, and discover your support on the RareConnect EDS community: https://www.rareconnect.org/en/community/ehlers-danlos-syndrome

Want to connect with other EDS warriors? Download our free iPhone app: mgty.co/iphoneapp Visual concept inspired by Elyssa C. TheMighty.com @TheMightySite Fa...

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