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Plexiform neurofibromas in neurofibromatosis type 1 (NF1): US-approved treatments and how Gulf families can access them

Creator: Reserve Meds
Published: 2026-10-17

A plain guide for families in the Gulf, checked against US FDA labels, Gulf drug registers and published medical research.

Reviewed by the Reserve Meds clinical operations team on 17 October 2026.

Plexiform neurofibromas in NF1: the short answer

For plexiform neurofibromas in NF1, the US FDA has approved two medicines covered on this page, each for a specific group of patients: Gomekli and Koselugo. Gomekli is already on at least one Gulf list, so start by asking your hospital about local supply. Where a medicine is not registered in your country, the treating hospital can ask the national regulator for permission to import it for one named patient. Reserve Meds is a digital health company that helps families and hospitals with that process. We do not diagnose or prescribe.

US FDA-approved medicines on this page: Gomekli and Koselugo.
Gulf registration (checked 17 October 2026): see each medicine below.
Legal route: Local supply where listed; otherwise a named-patient import request filed by the treating hospital.
Price: Quote on request.

What is plexiform neurofibromas in NF1?

Neurofibromatosis type 1 (NF1) causes changes in skin coloring and the growth of tumors along nerves. Almost all people with NF1 have multiple cafe-au-lait spots from early childhood. Most adults develop neurofibromas, which are noncancerous tumors on or under the skin, and these can also grow along nerves elsewhere in the body. People with NF1 have a higher risk of some cancers.^[1]

NF1 occurs in 1 in 3,000 to 4,000 people worldwide. It is autosomal dominant: about half of cases are inherited from an affected parent, and the rest come from new changes in the NF1 gene.^[1]

Plexiform neurofibromas in NF1 in the Gulf

A 2024 multicenter study from the Ministry of National Guard Health Affairs in Saudi Arabia included 184 patients with NF1 seen from 2015 to 2021. The median age at diagnosis was 11 years, 85.3 percent had cafe-au-lait spots, and 42.9 percent had two or more neurofibromas, with plexiform neurofibroma the most common subtype.^[2]

On 17 October 2026, Gomekli was listed in the Abu Dhabi Department of Health drug code list and was not found in the SFDA drugs list. We did not check Koselugo in those registers.^{[3, 4]}

US FDA-approved medicines for plexiform neurofibromas in NF1

Each medicine below is approved in the US for a specific group of patients. The wording follows the current US label. Your specialist decides whether any of them is right for the patient.

Gomekli (mirdametinib)
FDA-approved for adults and children aged 2 and older with NF1 who have symptomatic plexiform neurofibromas that cannot be completely removed by surgery. It is taken by mouth.^{[5, 6]}
US FDA approval: 11 February 2025. Gulf registers: Saudi Arabia: not found in the SFDA drugs list. Abu Dhabi: listed in the Abu Dhabi DoH drug code list. Checked 17 October 2026. Kuwait, Qatar and Oman: no public register checked.^{[4, 3]}
Country guides: Kuwait, Jordan, Lebanon, India
Koselugo (selumetinib)
FDA-approved for adults and children aged 1 year and older with NF1 who have symptomatic plexiform neurofibromas that cannot be operated on.^[7]
Current US label version: 26 May 2026. Gulf registers: Not part of our 17 October 2026 Gulf register check. We confirm the status for your country when you ask.

How families in the Gulf can access these medicines

If the medicine is listed in your country. Ask your specialist and the hospital pharmacy about local supply first. A listing does not mean every hospital stocks the medicine, but it is usually the fastest route, and you may not need us.

If it is not registered. The usual legal route is a named-patient request: the treating hospital, on your specialist's written request, asks the national regulator for permission to import the medicine for one patient, using the US FDA approval as the reference. In Saudi Arabia the SFDA Special Access Program guidance covers these requests; in Bahrain, NHRA Circular 41 of 2020 sets the procedure. Other Gulf countries have their own procedures, which the hospital pharmacy confirms.^{[8, 9]} Once approval is in place, Reserve Meds arranges supply through a US-licensed pharmaceutical wholesale partner to the hospital pharmacy.

Who does what

Your treating specialist decides whether a medicine is right for the patient and writes the letter.
The hospital checks local supply, files any import request, and gives the treatment safely.
The national regulator decides whether to approve the import of a medicine that is not registered.
The manufacturer decides where its medicine can be supplied, especially for cell and gene therapies.
Reserve Meds helps organize records, coordinates US supply through our wholesale partner, shipping and updates to your family. We do not give medical advice.

Documents you will usually need

A letter from the treating specialist with the diagnosis, past treatments and why this medicine is being considered
Reports that confirm the diagnosis, such as genetic, pathology or laboratory results, translated into English where needed
Recent clinic notes and a list of current medicines
For a hospital import request: the prescription, the hospital's request form and the written consent of the patient or guardian
Proof of the US FDA approval and the US prescribing information (we can supply these)

We give you a written timeline estimate once we see the hospital file. The regulator, the treatment center and the manufacturer set their own timelines.

What treatment costs

Quote on request. Your total cost depends on the medicine, the dose, shipping, import steps and coordination. Your coordination fee is quoted in writing for your case before you commit. No hidden charges.

How Reserve Meds helps

Reserve Meds is a digital health company. Medicines are supplied through a US-licensed pharmaceutical wholesale partner. We help your doctor and hospital prepare the file, arrange US supply and temperature-controlled shipping once approval is in place, and keep your family updated. We coordinate access to FDA-approved medicines only. Investigational medicines are only available through a manufacturer's expanded-access program requested by the treating physician; we can explain that route, but we do not supply them.

Ask us about treatment for plexiform neurofibromas in NF1

Tell us the medicine, the country, and how to reach you. We reply within one business day. On WhatsApp we usually reply the same day.

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Your coordination fee is quoted in writing for your case before you commit. No hidden charges.

Frequently asked questions

Is there an FDA-approved treatment for plexiform neurofibromas in NF1?

Yes. The medicines on this page have US FDA approval for specific groups of patients: Gomekli and Koselugo. The exact conditions are in each US label and are summarized above. Your specialist decides whether any of them fits.

Is Gomekli available in Saudi Arabia or the UAE?

Saudi Arabia: not found in the SFDA drugs list. Abu Dhabi: listed in the Abu Dhabi DoH drug code list. Checked 17 October 2026. Kuwait, Qatar and Oman: no public register checked. A listing in Abu Dhabi does not show federal UAE status, which we could not verify.

How can a family in the Gulf get Gomekli?

Ask the treating hospital about local supply first. If it is not available, the hospital can file a named-patient import request with the national regulator on your specialist's written request. Once approved, we arrange US supply to the hospital pharmacy.

How much does treatment cost?

Quote on request. Your total cost, including the medicine, shipping, import steps and coordination, is quoted in writing for your case before you commit. No hidden charges.

Does Reserve Meds diagnose or prescribe?

No. Reserve Meds is a digital health company. Medicines are supplied through a US-licensed pharmaceutical wholesale partner. We do not diagnose, prescribe or decide what a regulator approves. Your specialist and hospital make the medical decisions.

Are these medicines only for children?

No. The current US labels cover adults and children: Gomekli from age 2 and Koselugo from age 1, for symptomatic plexiform neurofibromas that cannot be fully removed or operated on.

Sources for the last answer: ^{[6, 7]}

Sources

Checked on 17 October 2026. Labels, registers and regulator rules change. Your hospital pharmacy confirms the current position before filing.

This page is general health information, not medical advice. It does not replace a consultation with your doctor.