RareConnect

RareConnect Connecting Rare Disease Patients Globally - www.rareconnect.org
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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.

We ask every new member to take just one action when they join. We want you to tell us what brings you to RareConnect. W...
16/01/2020

We ask every new member to take just one action when they join. We want you to tell us what brings you to RareConnect. What's the biggest challenge you face? What can others help you with?

Tell your community anything about yourself, you might be surprised just how much great support you get.

We're looking for people affected by any of these #rarediseases that would like to connect with others living with the s...
15/01/2020

We're looking for people affected by any of these #rarediseases that would like to connect with others living with the same condition. Interested? Send us an email at [email protected] or visit RareConnect.org

Share this image and #BreakTheIsolation!

Are you satisfied with the healthcare you receive for your rare disease? Do you think your healthcare is well organised?...
10/01/2020

Are you satisfied with the healthcare you receive for your rare disease? Do you think your healthcare is well organised? Share your views via the new EURORDIS #RareBarometer H-CARE Survey: http://tiny.cc/h-care

Through asking questions on topics such as whether patients receive a choice in their treatment, whether they receive emotional as well as physical care and their experience of follow-up care after a visit to a healthcare professional, EURORDIS will be able to better measure and understand levels of satisfaction with the healthcare received. This feedback will help hospitals that are part of a European Reference Network to deliver better healthcare for people living with rare diseases and complex conditions.

If you're looking for others with the same #raredisease but your disease is not listed on RareConnect and you don't want...
09/01/2020

If you're looking for others with the same #raredisease but your disease is not listed on RareConnect and you don't want to create a community with us right now, plant a flag and post your call on the General Discussion community.
www.rareconnect.org/en/community/rareconnect

Share the Rare Disease Day poster with your friends, family and network to spread the word that: Rare is many. Rare is s...
08/01/2020

Share the Rare Disease Day poster with your friends, family and network to spread the word that: Rare is many. Rare is strong. Rare is proud.

Out now! Download the official poster for #RareDiseaseDay 2020 now available via rarediseaseday.org/downloads. Share it today to show your support for the rare disease community!

Register now to join 850+ rare disease representatives from around the world at #ECRD2020 15-16 May in Stockholm to star...
07/01/2020

Register now to join 850+ rare disease representatives from around the world at #ECRD2020 15-16 May in Stockholm to start co-creating the future ecosystem for rare disease policies & services that can lead to a better patient journey in 2030 and beyond! https://www.rare-diseases.eu/

Here are some recommendations from Mayo Clinic including coping tips and strategies to assist you in getting through the...
23/12/2019

Here are some recommendations from Mayo Clinic including coping tips and strategies to assist you in getting through the Holidays season. Feel free to share what has worked for you! http://ow.ly/Spn030mWnlv

Capture your family moments during the festivities and take part in the EURORDIS Photo Award 2020. You can submit your p...
23/12/2019
EURORDIS Photo Award 2020!

Capture your family moments during the festivities and take part in the EURORDIS Photo Award 2020. You can submit your photos until 16 January!

This award is an opportunity to visually express what it means to live with a rare disease and to share your story with the rare disease community and beyond.

Open to anyone with an interest in rare diseases. You have until 16 January 2020 to send your favourite, most original, or artistic photo(s)

These are some of the most recent communities we've created along with patient organisations and patient advocates from ...
20/12/2019

These are some of the most recent communities we've created along with patient organisations and patient advocates from all over the world.

Do you know someone affected by any of these #RareDiseases? Share the link with them! rareconnect.org/en/communities

As we reflect on this year and prepare for the next, we can't help but think about all we've achieved in 2019. RareConne...
18/12/2019

As we reflect on this year and prepare for the next, we can't help but think about all we've achieved in 2019. RareConnect has improved the members' experience in so many ways! But, above all, we love to see that we keep growing the number of communities (40 new communities this year!) and, even though it will be a very long Facebook post, we want to list them all below so in the future, when someone searches for information about their rare disease, find out that there's an international support group waiting for them.

- Achalasia
- Adiposis dolorosa
- Anorectal malformations
- Arrhythmogenic Right Ventricular Cardiomyopathy
- ATIC Deficiency / AICA Ribosiduria
- Au-Kline syndrome
- Beaulieu-Boycott-Innes syndrome
- Blastic plasmacytoid dendritic cell neoplasm
- CTNNB1 – Haploinsufficiency Syndrome
- DeSanto-Shinawi Syndrome (DESSH)
- Extraskeletal myxoid chondrosarcoma
- FAM177A1 gene
- Familial osteochondritis dissecans
- FOXP2
- Fragile X associated primary ovarian insufficiency
- Frontotemporal dementia
- Gain of function CACNA1G mutation
- Gyrate atrophy
- Hereditary Hemorrhagic Telangiectasia
- Hereditary rickets
- KBG syndrome
- KCNB1
- KIF5C mutation
- Methylmalonic acidaemia
- Molybdenum Cofactor Deficiency
- Multiple Sulfatase Deficiency
- Mutations of ACTL6B
- Organic Acidemias
- Paroxysmal nocturnal hemoglobinuria
- Pediatric and Primary Lymphedema
- Progressive Supranuclear Palsy
- PTEN hamartoma tumor syndrome
- PURA Syndrome
- Schwartz-Jampel syndrome
- SCN2A related disorders
- Transient Global Amnesia
- Turner syndrome
- VCP disease
- ZC4H2-Associated Rare Disorders (ZARD)
- ZTTK syndrome

MPS Europe, MetabERN and Excellence in Paediatrics announce 5 Module Webinar Course: Challenges in Diagnosis and Disease...
16/12/2019
ONLINE COURSE: Challenges in Diagnosis and Disease Management of MPS and alpha-mannosidosis

MPS Europe, MetabERN and Excellence in Paediatrics announce 5 Module Webinar Course: Challenges in Diagnosis and Disease Management of MPS and Alpha-mannosidosis, starting on Wednesday, Decembar 18, 2019 (1:00 PM-2:00 PM CET)

The free-to-attend online course has been designed to help specialists and general paediatricians (preferably intended for primary care doctors and paediatricians) to reduce delay in the referral and diagnosis of patients with suspected MPS and alpha-mannosidosis, as well as improving the quality of patient’s lives who have already been diagnosed.

More information on this Online Course and the link to registration are available below.

*Join the Sanfillipo and Hunter syndrome RareConnect communities to share experiences, ask questions, and discover your support network: https://www.rareconnect.org/en/community/sanfilippo-syndrome; https://www.rareconnect.org/en/community/hunter-syndrome

Excellence in Pediatrics Community

Are you satisfied with the healthcare you receive for your rare disease? Do you think your healthcare is well organised?...
16/12/2019

Are you satisfied with the healthcare you receive for your rare disease? Do you think your healthcare is well organised? Share your views via the new EURORDIS #RareBarometer H-CARE Survey: http://tiny.cc/h-care

Join the new Au-Kline syndrome RareConnect community,  share experiences, ask questions, and discover your support netwo...
11/12/2019
RareConnect

Join the new Au-Kline syndrome RareConnect community, share experiences, ask questions, and discover your support network.

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....

Looking for families living with spinal muscular atrophy with respiratory distress type 2 or #SMARD2 that wish to connec...
11/12/2019

Looking for families living with spinal muscular atrophy with respiratory distress type 2 or #SMARD2 that wish to connect with a Norwegian family. Contact us at [email protected] or visit https://bit.ly/345RmVJ

Read a new story for #ATICdeficiency also known as #AICARibosiduria. 5 families have come together and are placing their...
10/12/2019

Read a new story for #ATICdeficiency also known as #AICARibosiduria. 5 families have come together and are placing their focus into building a community as well as finding out more information about this #RareDisease

VISIT: www.rareconnect.org/en/community/atic-gene

International Volunteer Day (IVD) on 5 December was designated by the United Nations in 1985 as an international observa...
05/12/2019

International Volunteer Day (IVD) on 5 December was designated by the United Nations in 1985 as an international observance day to celebrate the power and potential of volunteerism. We want to take this opportunity to thank the RareConnect Moderators for the contribution they make to their communities. THANK YOU for helping us every day to reach across borders, languages & diseases to break the isolation sometimes felt by people living with a rare disease. Thank you for your dedication and continued support!

RareConnect responds to rare disease patients’ need for information and connection by creating international online comm...
03/12/2019

RareConnect responds to rare disease patients’ need for information and connection by creating international online communities and discussion groups for specific diseases. Explore communities below to join the discussions: https://www.rareconnect.org/en/communities

We know that 2019 has not been the easiest year for many families and people living with rare diseases but despite the u...
28/11/2019

We know that 2019 has not been the easiest year for many families and people living with rare diseases but despite the uncertainty, the frustration and the isolation... What do you give thanks for during the holidays? How do you personally remain thankful during difficult times?

We're looking for people affected by any of these rare diseases that would like to connect with others living with the s...
27/11/2019

We're looking for people affected by any of these rare diseases that would like to connect with others living with the same condition. Interested? Send us an email at [email protected] or visit RareConnect.org

Share this image and #BreakTheIsolation!

Debra International is asking help in developing of a brand new clinical practice guideline on neonatal care in Epidermo...
26/11/2019

Debra International is asking help in developing of a brand new clinical practice guideline on neonatal care in Epidermolysis Bullosa. This guideline will focus on providing insight and recommendations on care for newborn babies with EB or suspected of having EB at the time of birth and during the first 6 weeks of their life.

Whether you are a parent, a carer, a family member, or a member of the community who has been involved in the care of a baby with EB, your responses to the following survey will directly affect the questions and issues addressed in the guideline: https://bit.ly/34mUnSl

If you are an EB healthcare professional with experience of providing care to newborns with EB, complete this survey: https://bit.ly/2QPmxSh


*Join the EB RareConnect community, share experiences, ask questions, and discover your support network: https://www.rareconnect.org/en/community/epidermolysis-bullosa

We are looking for families living with #PierpontSyndrome that wish to connect with another Italian-speaking family. Con...
26/11/2019

We are looking for families living with #PierpontSyndrome that wish to connect with another Italian-speaking family. Contact us at [email protected], comment below or visit http://ow.ly/eRep50xgREZ

Through the new #PTEN RareConnect online community, patients and those who care for them can communicate, sharing experi...
25/11/2019

Through the new #PTEN RareConnect online community, patients and those who care for them can communicate, sharing experiences and information in a safe, moderated online forum. www.rareconnect.org/en/community/phts

Remember that most conversations on our communities are for members only. RareConnect respects and protects the privacy ...
25/11/2019

Remember that most conversations on our communities are for members only. RareConnect respects and protects the privacy of its members making the discussions only visible to registered users.

23/11/2019

Looking for families with a child with chromosome 7p14.1 duplication that wish to connect with another English-speaking family.

Contact us at [email protected] or visit ow.ly/FDLh50xg79G

Living with a rare disease is hard enough to not get feedback from the rest of the community, especially if it's your fi...
22/11/2019

Living with a rare disease is hard enough to not get feedback from the rest of the community, especially if it's your first post. That's why we've worked on a new sorting option by unanswered posts to not leave anyone without a response. Let's #BreakTheIsolation!

These are some of the most recent communities we've created along with patient organisations and patient advocates from ...
21/11/2019
RareConnect

These are some of the most recent communities we've created along with patient organisations and patient advocates from all over the world.

Do you know someone affected by any of these #RareDiseases? Share the link with them! rareconnect.org/en/communities

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....

Do you want to be informed every time a new RareConnect.org community is created? Sign up today - The November issue is ...
15/11/2019

Do you want to be informed every time a new RareConnect.org community is created? Sign up today - The November issue is going out very soon! http://ow.ly/jO0O50wEvNW

The EURORDIS Photo Award is an opportunity to visually express what it means to live with a rare disease and to share yo...
14/11/2019

The EURORDIS Photo Award is an opportunity to visually express what it means to live with a rare disease and to share your story with the rare disease community and beyond. The three finalists with the most votes will each receive a Prize!

The EURORDIS Photo Award is open for submissions from around the world! Submit a photo that tells your story of living with a #raredisease by 16 January for the #EURORDISAwards2020 https://blackpearl.eurordis.org/photo-award/

November is National Family Caregivers Month in the US, a time to recognize and honor family caregivers!Five reasons car...
12/11/2019

November is National Family Caregivers Month in the US, a time to recognize and honor family caregivers!

Five reasons caregiving is so tough:

​1. Where's the other half? ~ ​Over half of family caregivers are women.
2. Relationships may suffer ~ ​One of out of every four caregivers reports diminished family relationships because of caregiving a loved one.
3. No wonder you’re tired ~ Most caregivers work outside the home either part or full-time in addition to their caregiving responsibilities.
4. Children do it too ~ ​Millions of young people, aged eight to 18, care for an adult relative on a daily basis.
5. It's hard to do self-care ~ Nearly 70 percent of caregivers report they don’t see their doctor regularly because of their responsibilities.

Source: https://www.ncbi.nlm.nih.gov/books/NBK396398/

November is pityriasis rubra pilaris Awareness Month. During 30 days, nearly 2,000 PRP patients, plus their caregivers w...
08/11/2019
PRP Awareness Month Agenda – The PRP Survival Guide

November is pityriasis rubra pilaris Awareness Month. During 30 days, nearly 2,000 PRP patients, plus their caregivers will have the opportunity to better understand PRP and its unrelenting challenges to body, mind, and spirit. The agenda for PRP Awareness Month is now available!

*Join the PRP RareConnect community, share experiences, ask questions, and discover your support network: https://www.rareconnect.org/en/community/pityriasis-rubra-pilaris

Posted on 10.27.201911.01.2019 by papabillPRP Awareness Month Agenda The month of November has once again been designated “PRP Awareness Month”. Over the next 30 days, nearly 2,000 PRP patients, plus their caregivers (parents, spouses and partners, extended family members, and friends) will have...

The next EURORDIS Summer School on Medicines Research & Development will take place on 8-12 June 2020 in Barcelona. This...
08/11/2019
EURORDIS Summer School

The next EURORDIS Summer School on Medicines Research & Development will take place on 8-12 June 2020 in Barcelona. This high-level training opportunity provides rare disease patient advocates and researchers working with rare diseases with the knowledge and skills needed to become experts in medicines R&D. Apply by 30 November!

Providing both patients and researchers with the knowledge and skills needed to become experts in medicines research and development.

We are sure that every parent has heard unwanted advice from relatives, friends or strangers. Sometimes the advice is we...
07/11/2019
Coping with Unwanted Advice about Your Child’s Medical Condition

We are sure that every parent has heard unwanted advice from relatives, friends or strangers. Sometimes the advice is well-meaning and really an attempt to let you know about other potential options for diagnosis and treatment. But a lot of the time, the advice is packaged in a whole lot of judgment.

This article from the Complex Child website offers some tips on how to handle this type of comments.

Have you ever received unwanted advice? How do you deal with it?

Coping with Unwanted Advice about Your Child’s Medical Condition Have you tried a gluten and dairy free diet to improve his behavior? I bet I could get him to eat if you just left him at my house all weekend! These essential oils are completely safe and will stop all her seizures, and they

Welcome European Cavernoma Alliance to Facebook! 6 national cavernoma patient organisations within Europe have started t...
06/11/2019

Welcome European Cavernoma Alliance to Facebook! 6 national cavernoma patient organisations within Europe have started to collaborate and are happy to announce the formation of a federation. They've also motivated the creation of a Cavernous angioma
RareConnect community. Check it out! ~ rareconnect.org/en/community/cavernous-angioma

***WHO ARE WE AND WHAT'S OUR VISION?***

We are 6 officially registered non-profit organisations:
🇫🇷 Association sur les Cavernomes Cérébraux, France
🇬🇧 Cavernoma Alliance UK - CAUK
🇮🇹 Angioma Cavernoso Cerebrale ANACC ONLUS, Italy
🇩🇪 Bundesverband Angeborene Gefäßfehlbildungen e.V., Germany
🇪🇸 Asociación Española de Cavernomas, Spain
🇸🇪 Cavernöst Angiom Sverige - CASE, Sweden

and 3 patient advocacy groups:
🇮🇪 Cavernoma Ireland
🇳🇴 Kavernøs Angiom Norge (KAN), Norway
🇫🇮 Kavernooma Finland.

OUR MISSION
As a European federation, it’s our mission to empower cavernoma patients in Europe by providing them with high-quality information, resources, tools and emotional support. We promote creative, yet strategic interventions and stimulate productive collaborations between researchers, patients and clinicians in order to accelerate better care, treatment options and ultimately to find a cure for cavernoma.

OUR VISION
We envision a future:
· in which every cavernoma patient in Europe will easily find access to specialist doctors who are well-informed about the disease AND about ongoing research
· in which researchers, doctors and patients have joined forces to improve care and find a cure.

#EuropeanCavernomaAlliance #CaverNoMore2030 #StopCavernomas #brainsShouldntBleed #WorldStrokeDay
#Cavernoma #CavernousAngioma #CCM

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Living with a rare disease can be an isolating experience. RareConnect was created 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.

Organisations à But Non Lucratifss á proximité


Autres Organisation non gouvernementale (ONG) à Barcelona

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