Resources for those affected by ROHHAD
While ROHHAD is an extremely rare condition, you’re not alone. ROHHAD parents and fighters are connecting all over the world to share help, advice and support thanks to the following pages and organizations.
SUPPORT GROUPS AND PAGES
ROHHAD SUPPORT GROUP (Facebook)
This private Facebook group is a support group for families with ROHHAD. We will support and fight for Life on this site. Over 170 members.
For ROHHAD patients and families only, you can also find the ROHHAD Association Family Support Group on Facebook:
https://www.facebook.com/groups/904526419604885/
ROHHAD ASSOCIATION
Our mission is to:
Fund and promote research that will lead to a new understanding of and treatments for ROHHAD, one day leading to a cure.
Offer support for people with ROHHAD, their families and their carers.
Campaign and raise awareness so that the needs of people with ROHHAD and all those affected by the disease are recognised within the wider society.
ROHHAD FIGHT
ROHHAD FIGHT Inc. is a 501c3 nonprofit organization. Our mission is to expand knowledge of the rare syndrome called ROHHAD, advance treatment, discover a cure, enhance the quality of life of the ROHHAD children and ease the financial burden of families who have children suffering from ROHHAD.
ROHHAD ASSOCIATION BELGIUM
ROHHAD Association Belgium has several objectives:
- To make the general public and the medical profession aware of the ROHHAD syndrome in order to detect future patients as soon as possible and increase their chances of survival. It is very likely that many children around the world die from ROHHAD syndrome without doctors having been able to make the right diagnosis and therefore to offer the child an appropriate medical follow-up.
- To financially support medical research in order to first understand the origin and causes of the syndrome and then to support the development of a treatment.
ROHHAD Nordic
ROHHAD Nordic, founded and based in Denmark 2024, is a non-profit association. It can be very difficult to be alone with such a rare disease as ROHHAD, and the association therefore was founded to create a community for everyone affected by the diagnosis. Our association is in the process of preparing the first (hopefully of many) annual gathering for ROHHAD patients and their relatives. In addition, the association will focus on seeking financial support for medical research into the disease.
ROHHAD Syndrome Facebook PAge
This Facebook group provides information regarding ROHHAD and to help raise awareness for families struck by ROHHAD.
We as parent's are looking to spread awareness and to help other families struggling to find a diagnosis for there child. Many children are going un-diagnosed and are not getting the correct treatment
Orphanet for French/Hebrew Speakers
For French speakers the Orphanet website is useful for all rare diseases including ROHHAD. Via this link all French speaking people have access to a brief overview of the disease and links for anaesthesia recommendations and the abstract is also translated to Hebrew.
www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=FR&Expert=293987
ROHHAD Reader: The official ROHHAD newsletter
The ROHHAD Reader is a special newsletter put together by ROHHAD stakeholders to support the ROHHAD community. It includes stories from ROHHAD patients and families, updates about ROHHAD research and fundraising, and fun and important information for patients, families, and friends of ROHHAD. Look for a new issue coming to social media soon. You can check out the most recent edition here, and see previous versions by visiting this page. Enjoy!
Reminders for ROHHAD Families
Get invovled with ROHHAD research and Advocacy!
The members of ROHHAD IC are working hard to advance knowledge of diagnosis and treatment of ROHHAD, to raise awareness, and to advocate for change to improve the lives of all ROHHAD patients. They need your help! Check out the research page to find ways you can participate. Contact any of the ROHHAD foundations above to find ways you can be a part of ROHHAD awareness and advocacy.
Use of anesthesia for patients
What is anesthesia? Anesthesia is a kind of medicine that is administered before some medical procedures in order to make patients sleepy and insensitive to pain.
Should patients use anesthesia? An article published by a clinical team at Ramón y Cajal University Hospital in Madrid, Spain showed that using anesthesia in children with ROHHAD requires special care, consideration and planning.
The doctors who wrote the article noticed that, after they administered anesthesia to their patient with ROHHAD, their patient experienced a decrease in his breathing rate, a decrease in the amount of oxygen in his blood, an increase in the amount of carbon dioxide in his blood and, eventually, episodes of apnea. These observations caused the doctors to change the type of anesthesia they were using in order to make sure their patient with ROHHAD was safe.
A clinical team at the Ann & Robert H. Lurie Children's Hospital of Chicago in Illinois, USA published an article about how a group of their patients responded to anesthesia during surgery. One of the patients in this group had ROHHAD. The doctors who wrote the paper reviewed their patients' medical records and identified a number of potential challenges associated with using anesthesia in children with ROHHAD and other similar disorders.
They concluded that while it is possible to use anesthesia safely in these children, it is also important that the doctors who administer the anesthesia are aware of the potential challenges. If you or your child is scheduled to receive anesthesia, it is a good idea to remind the doctors that you or your child has ROHHAD and may require special considerations.
VACCINATION FOR ROHHAD PATIENTS
Can people with Rare diseases receive COVID vaccines?
Due to covid-19 still being relatively new in the world, developments are constantly being made in research. if you have any questions or doubts, please don’t hesitate to take a look at other resources, some of which are provided here. also, discussing options with a trusted physician is always a good idea.
On January 15th, 2021 the ROHHAD Reader team attended a webinar hosted by NORD (the National Organization for Rare Disorders) where a panel of representatives from the U.S. CDC (Centers for Disease Control) and the U.S. FDA (Food and Drug Administration) answered questions about COVID-19 vaccination.
“How safe and effective are the Moderna and Pfizer vaccines for Rare Disease (RD) populations? What are the side effects for RD populations?”
There weren't enough patients with RDs enrolled in clinical trials to provide a significant conclusion. It is up to you and your doctor to discuss what is best for you.
“ If I get an mRNA vaccine now, will I become ineligible for genetic therapy in the future?”
Getting an mRNA vaccine will not prevent you from being able to receive genetic therapy.
Both Pfizer's and Moderna's COVID-19 vaccines are mRNA vaccines. mRNA is genetic material that contains instructions for making proteins. Once you get vaccinated, the mRNA tells the cells in your body how to make the "spike" protein found on the surface of the COVID-19 virus. Your body will create cells with this protein and your immune system will produce antibodies, cells that fight against viruses. Sometime during this process the cells within your body break down the mRNA into harmless pieces. At no point does the mRNA in either vaccine change your DNA.